PeerGalaxy

Oregon's Peer Support Directory

PeerGalaxy Calendar

Welcome to PeerGalaxy Calendar featuring over 82,000 monthly offerings of FREE telephone- and online-accessible peer support, recovery support + wellness activities!

Over 30+ warmlines plus webinars, workshops, job postings, special events, consumer input opportunities and more.

WE ARE PEER FOR YOU!

Click the Accessibility Button on the right side, halfway down in the middle, for enhanced viewing and/or access options!  Click the Translate Button in the lower left corner for language options. 

Your use of this site is subject to the Privacy Policy, Terms and Conditions of Use.  Reminder: Fees or charges may be charged by your carrier for sending or receiving SMS text messaging, phone, or data.

If you have an event to add, email us: webmail@peergalaxy.com

Training Opportunities in July 2020
List Provided Courtesy of State of Oregon, Oregon Health Authority
Click here to download PDF Format, 16 pages

How Events are Sorted:

First, at the top of the list: Disaster Hotline & Oregon Safe + Strong Helpline.

Next in the list: Bundled “All Day” Events for organizations with events happening at multiple times throughout the day and/or in many formats or locations; these are bundled into a single listing to prevent endless scrolling.  Usually these offer a lookup by zip code or other criteria. 

Lastly, Time-Specific Events listed by start time from 12:01am early morning to 11:59pm late night.  Warmlines and places east of Oregon’s time zone tend to start earlier (e.g. 4am in Oregon is 7am in New York).

Jun
26
Sun
01 – Helpline – CBL – Call Blackline – Voice and Text Support for the Black, Black LGBTQ+, Brown, Native and Muslim Community – (800) 604-5841 @ Call/Text
Jun 26 all-day

Call toll-free anytime 24/7

(800) 604-5841

BlackLine® provides a space for peer support, counseling, witnessing and affirming the lived experiences to folxs who are most impacted by systematic oppression with an LGBTQ+ Black Femme Lens.

Call BlackLine® prioritizes BIPOC
(Black, Indigenous and People of Color).

By us for us.

 

AM – All Month – Brain Injury Awareness Month – Hydrocephalus Awareness – Support Groups, Events, Resources
Jun 26 all-day

 

Brain Injury Awareness Month — Hydrocephalus Awareness

Support Groups, Events, Resources, Advocacy

 

Facts about Hydrocephalus


Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood.

Here are a few facts about Hydrocephalus:

  • Hydrocephalus is one of the most common birth defects, each year one out of every 500 births results in hydrocephalus
  • Another 6,000 children annually develop hydrocephalus during the first 2 years of life
  • Brain injury occurs every 15 seconds in this country – and in some cases leads to the development of hydrocephalus
  • There are approximately 75,000 discharges a year from hospitals in the U.S. with a diagnosis of hydrocephalus
  • More than 50% of hydrocephalus cases are congenital
  • 70-90% of children born with spina bifida also develop hydrocephalus
  • CSF shunting procedures account for approximately $100 million in health care spending in the United States alone – half of this amount is spent on shunt revisions
  • In the past 25+ years, death rates associated with hydrocephalus have decreased from 54% to 5%, and the occurrence of intellectual disability has decreased from 62% to 30%
  • Normal Pressure Hydrocephalus affects adults and can cause dementia, difficulty in walking and, urinary incontinence
  • No statistics are kept (by our government), for those who develop

 

HELP LINES, PEER SUPPORT, SUPPORT GROUPS

 

 

The Hydrocephalus Association wants you to know that You Are Not Alone – We Are Here For You!

The Hydrocephalus Association staff and teams of trained volunteers are ready to answer your questions and listen to your concerns,  either by phone or email. Simply click on one of the following links to get connected to a volunteer or staff member for support, information, and connection.

 

PEER SUPPORT

To get connected with an HA Peer, please use this link to connect to a request from, after you complete it  your HA Peer will reach out to you very soon!

FOR ONE-TO-ONE PEER SUPPORT, CLICK HERE

 

CALL THE HA HELPLINE

Call (888) 598-3789 or email info@hydroassoc.org for support, resources, and answers to your questions.

Monday through Friday from 9:00 AM to 5:00 PM Eastern.

EMAIL HA CYBER VOLUNTEERS

Do you have a question about hydrocephalus? Treatment? Ongoing care?  The impact of the condition on all aspects of life? Our cyber volunteers are ready to answer your questions and share their experience via email.

You can submit them via email by clicking here!

 

Virtual Meet-ups

When: Every Saturday
Adults with Hydrocephalus Meet-Up (DC, MD, VA, PA, DE, NJ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
Every Saturday
Contact: Sierra Smith and Sara Curran-Kellogg
Adults with Hydrocephalus Meet-Up (WA, OR, ID, CA, NV, UT, NM, AZ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
1st Friday of the month
Contact: Kelly Varga
Adults with Hydrocephalus Meet-Up (FL, GA, AL, SC, MS)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
4th Sunday of the month
Contact: Jessica Coffaro
Teens Hang-Out
Come meet other teens with the condition! We’ll hang out, maybe play an icebreaker game, talk, and hopefully make some new friends.

When:
1st Sunday of the month
Contact: Olivia Maccoux and Tomas Rodriguez
Young Adults in their 20s Meet-Up
Come hang out with us and meet other young adults in their 20s living with hydrocephalus. We will have fun intros, icebreakers, and conversation. Let’s get to know each other!

When:
Every Saturday
Contact: info@hydroassoc.org
Dallas NPH Meet-Up
Join us for an NPH Community Network get together! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the NPH journey do. We welcome all those living with NPH in the State of Texas and surrounding states!

When:
3rd Wednesday of the month
Contact: Gary Chaffee
Parents Supporting Parents of Adult Children with IDD
OPEN TO all parents of adults living with hydrocephalus and intellectual and developmental disabilities. Our community is diverse in the many ways and degrees that hydrocephalus impacts our loved ones. For those of us supporting children who are adults with intellectual disability (ID), physical disability, and/or learning challenges (LD), the road can be challenging and lonely. Questions of managing their care, self-advocacy, independent living, and finding success in the workforce all loom large. Join other parents on a similar journey for connection and great discussion.

When:
4th Wednesday of the month
Contact: Jackie Mullock
Flourishing in Mid-Life: Group for Women Age 40- 59!

 

Local Community Networks Of Support For Hydrocephalus

We encourage you to explore the local groups and networks available in your area. Be informed and stay connected!

Facebook

Oregon

Portland (& Vancouver, WA)

Online

info@hydroassoc.org

 

WEBINARS AND EDUCATION

We are pleased to offer educational webinars to help you stay informed and current on the latest news surrounding hydrocephalus. These interactive, free webinars are designed to educate our community on a variety of topics which include normal pressure hydrocephalus (NPH), research, shunt technology, and more.Our webinar series features presentations from medical professionals, researchers, and others with a direct connection to hydrocephalus. Each webinar is moderated by HA’s Support and Education Staff and are archived and accessible following the event in our webinar recordings. Our Support and Education Webinar Series is made possible through the generosity of our industry partner  Medtronic


Future Webinars

Please stay tuned for our 2022 Support and Education Webinar Series and more information regarding our future webinars.


Past Webinars

Congressional Fireside Chat – June 15, 2021

College Transition for Students with Hydrocephalus – December 14, 2021

College Planning for Students Who Learn Differently – March 10, 2021

Descripcion General de la hidrocefalia – July 17, 2021

 

 

National Hydrocephalus Foundation

National Hydrocephalus Foundation

 

What is Hydrocephalus?

Signs-of Hydrocephalus and Shunt Malfunctions

The most common signs are the following: Congenital Signs normally found in infants and children EARLY Enlargement of the head Irritability Lethargic Feeds poorly/Decrease in appetite Recurrent vomiting Prefers to be alone LATER Distended scalp veins High-pitched cry Increased muscle tone Enlarged and bulging fontanel “Sunset Eyes” (downward gaze) Acquired Signs normally found in older …

Normal Pressure Hydrocephalus (NPH) is a disorder, which usually strikes middle age to older adults. In NPH, the ventricles are enlarged, but there is no increase of pressure within the ventricles. The problem is thought to be due to the CSF not being fully reabsorbed by the body (through the arachnoid villi). NPH can be …

Hydrocephalus is diagnosed by a neurological exam and imaging techniques such as an ultrasound, CT scan, MRI, Fetal MRI (also referred to as Fast MRI, and is used on a pregnant woman who is carrying a child diagnosed with hydrocephalus) – and on occasion, a pressure-monitoring system. A doctor will order the appropriate tests according to …

Hydrocephalus Defined

Hydrocephalus is commonly referred to as “water on the brain.” The so-called “water” is actually cerebrospinal fluid (CSF), a clear liquid that looks like water and is produced in the 4 ventricles (cavities) of the brain, connected by narrow pathways.  CSF is in constant production and absorption;  it has a defined pathway from the lateral …

Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood. Here are a few facts about Hydrocephalus: Hydrocephalus is one of the most common birth …

Treatment of Hydrocephalus

Shunts What is a Shunt? A shunt is a mechanical device designed to transport the excess CSF from or near the point of obstruction to a re-absorption site and it is implanted under the skin. There are many different types of shunts, but there is no perfect shunt. The quest continues for one, the shunt …

 

Youth Webinar Series

Hydrocephalus Canada and Holland Bloorview Kids Rehabilitation Hospital are excited to share some helpful information and resources with you! Our Youth Webinar Series  focuses on topics that young people with hydrocephalus and/or spina bifida often have questions about.

Webinar #1 


Melissa Thorne

Presentation by Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“If You’ve Got Questions, We’ve Got Answers”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa Thorne will share her insights as the Youth Facilitator at Holland Bloorview in the Spina Bifida and Spinal Cord Injury Clinic and Youth Engagement department, as well as a person with sbh. Having lived at Holland Bloorview as an inpatient for a year after having multiple orthopedic surgeries in grade 10, Melissa will share her story, her background and explain how she helps kids address challenges like ‘growing up ready’. We will also have a guest speaker! Melissa will follow her presentation with a question and answer session.

 

Webinar #2

               
Steph Di Martino     Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Social Skills and Friendship”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. Steph and Melissa will explore strategies to build conversation skills, talk about where to meet people your age, how to build connections, what to look for in a friend and help you become aware of what you bring to the table of friendship. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #3

       
Kristen English    Melissa Thorne

Presentation by Kristen English, Therapeutic Recreation Specialist and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

 “Community Interaction and Recreation”

Watch on YouTube

November 3 at 7:00 p.m. EDT

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 12-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Kristen English will share her insights as a Certified Therapeutic Recreation Specialist in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. Kristen provides adapted sport and recreation opportunities to children and youth with disabilities including wheelchair basketball, All Abilities Soccer and the Access Boom Sailing program. She is also a Master of Health Evaluation candidate at the University of Waterloo. You can expect Kristen and Melissa to address how to find meaning in recreation and leisure participation, explore sports and recreation in your community as well as look at equipment that can be adapted to your needs. Kristen and Melissa will follow their presentation with a question and answer session.

 

Webinar #4

               
Steph Di Martino      Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Life Skills and Independence – Transition to Adulthood”

Watch on YouTube

November 10 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach at Holland Bloorview. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. You can expect Steph and Melissa to talk about tips and tricks for navigating the adult world, how to grow up ready and get involved in your own health care, learning responsibilities in the home (cooking, laundry, making plans, cleaning) as well as time management and organization. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #5


Melissa Thorne

Steph Di Martino 

Kristen English

Presentation by all speakers from our Youth Webinar Series, including: Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator, Steph Di Martino, Life Skills Coach and Kristen English, Therapeutic Recreation Specialist

“Still Have Questions? We Have Answers!”

Watch on YouTube

November 17 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa, Steph and Kristen from Holland Bloorview will provide participants with a recap and overview of the key points of each webinar in our Youth Webinar Series. Participants will also be given the opportunity to participate in a breakout room with a clinician. Melissa, Steph and Kristen will follow their presentation with a general question and answer session.

Have questions you want to ask any of our presenters? Need more information?
Send your questions in advance of any or all webinars. Please submit your questions to awalters@hydrocephalus.ca or info@hydrocephalus.ca

 

HEALTH AND MENTAL HEALTH

Anxiety, Depression, and Hydrocephalus in Children and Adolescents

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of parents and siblings of individuals with hydrocephalus.

Watch Now >

 

Anxiety, Depression, and Hydrocephalus in Adults and NPH

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of caregivers of individuals with hydrocephalus.

Watch Now >

The Healthiest You: Finding Balance Through Nutrition and Lifestyle Techniques

(You Tube)

Join Bethany Holmes, CHHC, in discussing how to find balance through nutrition and lifestyle techniques. This session will focus on self-care and whole-body wellness for healing. Bethany will share her personal story of going through brain surgery and her recovery and healing process. You will learn the importance of eating real foods to fuel your brain and body, giving you the nutrients and energy you need to feel your best. In this session, you will also learn several lifestyle techniques that will help cultivate self-love and appreciation and how to better cope with anxiety and stress. We will also discuss balancing health with social life, work and everyday responsibilities.

Watch Now >

 

 

Warmline – IOA – Institute on Aging – The Friendship Line – 24/7 – Weekdays and Weekends @ Phone
Jun 26 all-day

THE FRIENDSHIP LINE

24 Hour Telephone Hotline/Warmline

800-971-0016

We support individuals who find connecting within the community challenging

The Institute on Aging’s 24-hour toll-free Friendship Line is the only accredited crisis line in the country for people aged 60 years and older, and adults living with disabilities. We also make on-going outreach calls to lonely older adults. While there are other organizations that respond to the needs of people who may be contemplating suicide, none provides the type of services that IOA’s Friendship Line offers to respond to the public health problem of suicide among the elderly. Knowing that older people do not contact traditional suicide prevention centers on a regular basis even if they are considering suicide, we created the only program nationwide that reaches out to lonely, depressed, isolated, frail and/or suicidal older adults. Our trained volunteers specialize in offering a caring ear and having a friendly conversation with depressed older adults.

The Friendship Line is both a crisis intervention hotline and a warmline for non-emergency emotional support calls. Founded in 1973 by Dr. Patrick Arbore, Director of IOA’s Center for Elderly Suicide Prevention, and accredited by the American Association of Suicidology, Friendship Line provides round-the-clock crisis support services including:

  • Providing emotional support
  • Elder abuse reporting
  • Well-being checks
  • Grief support through assistance and reassurance
  • Active suicide intervention
  • Information and referrals for isolated older adults, and adults living with disabilities

In addition to receiving incoming calls, Friendship Line also offers outreach to eligible callers. We connect with people on a regular basis, and help monitor their physical and mental health concerns. The call-out services act as an intervention to prevent suicide in the long term by improving the quality of life and connectedness of isolated callers. Any aging adult or person living with disabilities, who suffers from depression, loneliness, isolation, anxiousness, or may be thinking about death or suicide, can benefit from completely confidential phone calls with Friendship Line volunteers. Sometimes the road to happiness begins by simply saying hello to someone who cares.

Jun
27
Mon
01 – Helpline – CBL – Call Blackline – Voice and Text Support for the Black, Black LGBTQ+, Brown, Native and Muslim Community – (800) 604-5841 @ Call/Text
Jun 27 all-day

Call toll-free anytime 24/7

(800) 604-5841

BlackLine® provides a space for peer support, counseling, witnessing and affirming the lived experiences to folxs who are most impacted by systematic oppression with an LGBTQ+ Black Femme Lens.

Call BlackLine® prioritizes BIPOC
(Black, Indigenous and People of Color).

By us for us.

 

AM – All Month – Brain Injury Awareness Month – Hydrocephalus Awareness – Support Groups, Events, Resources
Jun 27 all-day

 

Brain Injury Awareness Month — Hydrocephalus Awareness

Support Groups, Events, Resources, Advocacy

 

Facts about Hydrocephalus


Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood.

Here are a few facts about Hydrocephalus:

  • Hydrocephalus is one of the most common birth defects, each year one out of every 500 births results in hydrocephalus
  • Another 6,000 children annually develop hydrocephalus during the first 2 years of life
  • Brain injury occurs every 15 seconds in this country – and in some cases leads to the development of hydrocephalus
  • There are approximately 75,000 discharges a year from hospitals in the U.S. with a diagnosis of hydrocephalus
  • More than 50% of hydrocephalus cases are congenital
  • 70-90% of children born with spina bifida also develop hydrocephalus
  • CSF shunting procedures account for approximately $100 million in health care spending in the United States alone – half of this amount is spent on shunt revisions
  • In the past 25+ years, death rates associated with hydrocephalus have decreased from 54% to 5%, and the occurrence of intellectual disability has decreased from 62% to 30%
  • Normal Pressure Hydrocephalus affects adults and can cause dementia, difficulty in walking and, urinary incontinence
  • No statistics are kept (by our government), for those who develop

 

HELP LINES, PEER SUPPORT, SUPPORT GROUPS

 

 

The Hydrocephalus Association wants you to know that You Are Not Alone – We Are Here For You!

The Hydrocephalus Association staff and teams of trained volunteers are ready to answer your questions and listen to your concerns,  either by phone or email. Simply click on one of the following links to get connected to a volunteer or staff member for support, information, and connection.

 

PEER SUPPORT

To get connected with an HA Peer, please use this link to connect to a request from, after you complete it  your HA Peer will reach out to you very soon!

FOR ONE-TO-ONE PEER SUPPORT, CLICK HERE

 

CALL THE HA HELPLINE

Call (888) 598-3789 or email info@hydroassoc.org for support, resources, and answers to your questions.

Monday through Friday from 9:00 AM to 5:00 PM Eastern.

EMAIL HA CYBER VOLUNTEERS

Do you have a question about hydrocephalus? Treatment? Ongoing care?  The impact of the condition on all aspects of life? Our cyber volunteers are ready to answer your questions and share their experience via email.

You can submit them via email by clicking here!

 

Virtual Meet-ups

When: Every Saturday
Adults with Hydrocephalus Meet-Up (DC, MD, VA, PA, DE, NJ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
Every Saturday
Contact: Sierra Smith and Sara Curran-Kellogg
Adults with Hydrocephalus Meet-Up (WA, OR, ID, CA, NV, UT, NM, AZ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
1st Friday of the month
Contact: Kelly Varga
Adults with Hydrocephalus Meet-Up (FL, GA, AL, SC, MS)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
4th Sunday of the month
Contact: Jessica Coffaro
Teens Hang-Out
Come meet other teens with the condition! We’ll hang out, maybe play an icebreaker game, talk, and hopefully make some new friends.

When:
1st Sunday of the month
Contact: Olivia Maccoux and Tomas Rodriguez
Young Adults in their 20s Meet-Up
Come hang out with us and meet other young adults in their 20s living with hydrocephalus. We will have fun intros, icebreakers, and conversation. Let’s get to know each other!

When:
Every Saturday
Contact: info@hydroassoc.org
Dallas NPH Meet-Up
Join us for an NPH Community Network get together! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the NPH journey do. We welcome all those living with NPH in the State of Texas and surrounding states!

When:
3rd Wednesday of the month
Contact: Gary Chaffee
Parents Supporting Parents of Adult Children with IDD
OPEN TO all parents of adults living with hydrocephalus and intellectual and developmental disabilities. Our community is diverse in the many ways and degrees that hydrocephalus impacts our loved ones. For those of us supporting children who are adults with intellectual disability (ID), physical disability, and/or learning challenges (LD), the road can be challenging and lonely. Questions of managing their care, self-advocacy, independent living, and finding success in the workforce all loom large. Join other parents on a similar journey for connection and great discussion.

When:
4th Wednesday of the month
Contact: Jackie Mullock
Flourishing in Mid-Life: Group for Women Age 40- 59!

 

Local Community Networks Of Support For Hydrocephalus

We encourage you to explore the local groups and networks available in your area. Be informed and stay connected!

Facebook

Oregon

Portland (& Vancouver, WA)

Online

info@hydroassoc.org

 

WEBINARS AND EDUCATION

We are pleased to offer educational webinars to help you stay informed and current on the latest news surrounding hydrocephalus. These interactive, free webinars are designed to educate our community on a variety of topics which include normal pressure hydrocephalus (NPH), research, shunt technology, and more.Our webinar series features presentations from medical professionals, researchers, and others with a direct connection to hydrocephalus. Each webinar is moderated by HA’s Support and Education Staff and are archived and accessible following the event in our webinar recordings. Our Support and Education Webinar Series is made possible through the generosity of our industry partner  Medtronic


Future Webinars

Please stay tuned for our 2022 Support and Education Webinar Series and more information regarding our future webinars.


Past Webinars

Congressional Fireside Chat – June 15, 2021

College Transition for Students with Hydrocephalus – December 14, 2021

College Planning for Students Who Learn Differently – March 10, 2021

Descripcion General de la hidrocefalia – July 17, 2021

 

 

National Hydrocephalus Foundation

National Hydrocephalus Foundation

 

What is Hydrocephalus?

Signs-of Hydrocephalus and Shunt Malfunctions

The most common signs are the following: Congenital Signs normally found in infants and children EARLY Enlargement of the head Irritability Lethargic Feeds poorly/Decrease in appetite Recurrent vomiting Prefers to be alone LATER Distended scalp veins High-pitched cry Increased muscle tone Enlarged and bulging fontanel “Sunset Eyes” (downward gaze) Acquired Signs normally found in older …

Normal Pressure Hydrocephalus (NPH) is a disorder, which usually strikes middle age to older adults. In NPH, the ventricles are enlarged, but there is no increase of pressure within the ventricles. The problem is thought to be due to the CSF not being fully reabsorbed by the body (through the arachnoid villi). NPH can be …

Hydrocephalus is diagnosed by a neurological exam and imaging techniques such as an ultrasound, CT scan, MRI, Fetal MRI (also referred to as Fast MRI, and is used on a pregnant woman who is carrying a child diagnosed with hydrocephalus) – and on occasion, a pressure-monitoring system. A doctor will order the appropriate tests according to …

Hydrocephalus Defined

Hydrocephalus is commonly referred to as “water on the brain.” The so-called “water” is actually cerebrospinal fluid (CSF), a clear liquid that looks like water and is produced in the 4 ventricles (cavities) of the brain, connected by narrow pathways.  CSF is in constant production and absorption;  it has a defined pathway from the lateral …

Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood. Here are a few facts about Hydrocephalus: Hydrocephalus is one of the most common birth …

Treatment of Hydrocephalus

Shunts What is a Shunt? A shunt is a mechanical device designed to transport the excess CSF from or near the point of obstruction to a re-absorption site and it is implanted under the skin. There are many different types of shunts, but there is no perfect shunt. The quest continues for one, the shunt …

 

Youth Webinar Series

Hydrocephalus Canada and Holland Bloorview Kids Rehabilitation Hospital are excited to share some helpful information and resources with you! Our Youth Webinar Series  focuses on topics that young people with hydrocephalus and/or spina bifida often have questions about.

Webinar #1 


Melissa Thorne

Presentation by Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“If You’ve Got Questions, We’ve Got Answers”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa Thorne will share her insights as the Youth Facilitator at Holland Bloorview in the Spina Bifida and Spinal Cord Injury Clinic and Youth Engagement department, as well as a person with sbh. Having lived at Holland Bloorview as an inpatient for a year after having multiple orthopedic surgeries in grade 10, Melissa will share her story, her background and explain how she helps kids address challenges like ‘growing up ready’. We will also have a guest speaker! Melissa will follow her presentation with a question and answer session.

 

Webinar #2

               
Steph Di Martino     Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Social Skills and Friendship”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. Steph and Melissa will explore strategies to build conversation skills, talk about where to meet people your age, how to build connections, what to look for in a friend and help you become aware of what you bring to the table of friendship. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #3

       
Kristen English    Melissa Thorne

Presentation by Kristen English, Therapeutic Recreation Specialist and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

 “Community Interaction and Recreation”

Watch on YouTube

November 3 at 7:00 p.m. EDT

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 12-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Kristen English will share her insights as a Certified Therapeutic Recreation Specialist in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. Kristen provides adapted sport and recreation opportunities to children and youth with disabilities including wheelchair basketball, All Abilities Soccer and the Access Boom Sailing program. She is also a Master of Health Evaluation candidate at the University of Waterloo. You can expect Kristen and Melissa to address how to find meaning in recreation and leisure participation, explore sports and recreation in your community as well as look at equipment that can be adapted to your needs. Kristen and Melissa will follow their presentation with a question and answer session.

 

Webinar #4

               
Steph Di Martino      Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Life Skills and Independence – Transition to Adulthood”

Watch on YouTube

November 10 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach at Holland Bloorview. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. You can expect Steph and Melissa to talk about tips and tricks for navigating the adult world, how to grow up ready and get involved in your own health care, learning responsibilities in the home (cooking, laundry, making plans, cleaning) as well as time management and organization. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #5


Melissa Thorne

Steph Di Martino 

Kristen English

Presentation by all speakers from our Youth Webinar Series, including: Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator, Steph Di Martino, Life Skills Coach and Kristen English, Therapeutic Recreation Specialist

“Still Have Questions? We Have Answers!”

Watch on YouTube

November 17 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa, Steph and Kristen from Holland Bloorview will provide participants with a recap and overview of the key points of each webinar in our Youth Webinar Series. Participants will also be given the opportunity to participate in a breakout room with a clinician. Melissa, Steph and Kristen will follow their presentation with a general question and answer session.

Have questions you want to ask any of our presenters? Need more information?
Send your questions in advance of any or all webinars. Please submit your questions to awalters@hydrocephalus.ca or info@hydrocephalus.ca

 

HEALTH AND MENTAL HEALTH

Anxiety, Depression, and Hydrocephalus in Children and Adolescents

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of parents and siblings of individuals with hydrocephalus.

Watch Now >

 

Anxiety, Depression, and Hydrocephalus in Adults and NPH

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of caregivers of individuals with hydrocephalus.

Watch Now >

The Healthiest You: Finding Balance Through Nutrition and Lifestyle Techniques

(You Tube)

Join Bethany Holmes, CHHC, in discussing how to find balance through nutrition and lifestyle techniques. This session will focus on self-care and whole-body wellness for healing. Bethany will share her personal story of going through brain surgery and her recovery and healing process. You will learn the importance of eating real foods to fuel your brain and body, giving you the nutrients and energy you need to feel your best. In this session, you will also learn several lifestyle techniques that will help cultivate self-love and appreciation and how to better cope with anxiety and stress. We will also discuss balancing health with social life, work and everyday responsibilities.

Watch Now >

 

 

Warmline – IOA – Institute on Aging – The Friendship Line – 24/7 – Weekdays and Weekends @ Phone
Jun 27 all-day

THE FRIENDSHIP LINE

24 Hour Telephone Hotline/Warmline

800-971-0016

We support individuals who find connecting within the community challenging

The Institute on Aging’s 24-hour toll-free Friendship Line is the only accredited crisis line in the country for people aged 60 years and older, and adults living with disabilities. We also make on-going outreach calls to lonely older adults. While there are other organizations that respond to the needs of people who may be contemplating suicide, none provides the type of services that IOA’s Friendship Line offers to respond to the public health problem of suicide among the elderly. Knowing that older people do not contact traditional suicide prevention centers on a regular basis even if they are considering suicide, we created the only program nationwide that reaches out to lonely, depressed, isolated, frail and/or suicidal older adults. Our trained volunteers specialize in offering a caring ear and having a friendly conversation with depressed older adults.

The Friendship Line is both a crisis intervention hotline and a warmline for non-emergency emotional support calls. Founded in 1973 by Dr. Patrick Arbore, Director of IOA’s Center for Elderly Suicide Prevention, and accredited by the American Association of Suicidology, Friendship Line provides round-the-clock crisis support services including:

  • Providing emotional support
  • Elder abuse reporting
  • Well-being checks
  • Grief support through assistance and reassurance
  • Active suicide intervention
  • Information and referrals for isolated older adults, and adults living with disabilities

In addition to receiving incoming calls, Friendship Line also offers outreach to eligible callers. We connect with people on a regular basis, and help monitor their physical and mental health concerns. The call-out services act as an intervention to prevent suicide in the long term by improving the quality of life and connectedness of isolated callers. Any aging adult or person living with disabilities, who suffers from depression, loneliness, isolation, anxiousness, or may be thinking about death or suicide, can benefit from completely confidential phone calls with Friendship Line volunteers. Sometimes the road to happiness begins by simply saying hello to someone who cares.

Jun
28
Tue
01 – Helpline – CBL – Call Blackline – Voice and Text Support for the Black, Black LGBTQ+, Brown, Native and Muslim Community – (800) 604-5841 @ Call/Text
Jun 28 all-day

Call toll-free anytime 24/7

(800) 604-5841

BlackLine® provides a space for peer support, counseling, witnessing and affirming the lived experiences to folxs who are most impacted by systematic oppression with an LGBTQ+ Black Femme Lens.

Call BlackLine® prioritizes BIPOC
(Black, Indigenous and People of Color).

By us for us.

 

AM – All Month – Brain Injury Awareness Month – Hydrocephalus Awareness – Support Groups, Events, Resources
Jun 28 all-day

 

Brain Injury Awareness Month — Hydrocephalus Awareness

Support Groups, Events, Resources, Advocacy

 

Facts about Hydrocephalus


Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood.

Here are a few facts about Hydrocephalus:

  • Hydrocephalus is one of the most common birth defects, each year one out of every 500 births results in hydrocephalus
  • Another 6,000 children annually develop hydrocephalus during the first 2 years of life
  • Brain injury occurs every 15 seconds in this country – and in some cases leads to the development of hydrocephalus
  • There are approximately 75,000 discharges a year from hospitals in the U.S. with a diagnosis of hydrocephalus
  • More than 50% of hydrocephalus cases are congenital
  • 70-90% of children born with spina bifida also develop hydrocephalus
  • CSF shunting procedures account for approximately $100 million in health care spending in the United States alone – half of this amount is spent on shunt revisions
  • In the past 25+ years, death rates associated with hydrocephalus have decreased from 54% to 5%, and the occurrence of intellectual disability has decreased from 62% to 30%
  • Normal Pressure Hydrocephalus affects adults and can cause dementia, difficulty in walking and, urinary incontinence
  • No statistics are kept (by our government), for those who develop

 

HELP LINES, PEER SUPPORT, SUPPORT GROUPS

 

 

The Hydrocephalus Association wants you to know that You Are Not Alone – We Are Here For You!

The Hydrocephalus Association staff and teams of trained volunteers are ready to answer your questions and listen to your concerns,  either by phone or email. Simply click on one of the following links to get connected to a volunteer or staff member for support, information, and connection.

 

PEER SUPPORT

To get connected with an HA Peer, please use this link to connect to a request from, after you complete it  your HA Peer will reach out to you very soon!

FOR ONE-TO-ONE PEER SUPPORT, CLICK HERE

 

CALL THE HA HELPLINE

Call (888) 598-3789 or email info@hydroassoc.org for support, resources, and answers to your questions.

Monday through Friday from 9:00 AM to 5:00 PM Eastern.

EMAIL HA CYBER VOLUNTEERS

Do you have a question about hydrocephalus? Treatment? Ongoing care?  The impact of the condition on all aspects of life? Our cyber volunteers are ready to answer your questions and share their experience via email.

You can submit them via email by clicking here!

 

Virtual Meet-ups

When: Every Saturday
Adults with Hydrocephalus Meet-Up (DC, MD, VA, PA, DE, NJ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
Every Saturday
Contact: Sierra Smith and Sara Curran-Kellogg
Adults with Hydrocephalus Meet-Up (WA, OR, ID, CA, NV, UT, NM, AZ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
1st Friday of the month
Contact: Kelly Varga
Adults with Hydrocephalus Meet-Up (FL, GA, AL, SC, MS)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
4th Sunday of the month
Contact: Jessica Coffaro
Teens Hang-Out
Come meet other teens with the condition! We’ll hang out, maybe play an icebreaker game, talk, and hopefully make some new friends.

When:
1st Sunday of the month
Contact: Olivia Maccoux and Tomas Rodriguez
Young Adults in their 20s Meet-Up
Come hang out with us and meet other young adults in their 20s living with hydrocephalus. We will have fun intros, icebreakers, and conversation. Let’s get to know each other!

When:
Every Saturday
Contact: info@hydroassoc.org
Dallas NPH Meet-Up
Join us for an NPH Community Network get together! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the NPH journey do. We welcome all those living with NPH in the State of Texas and surrounding states!

When:
3rd Wednesday of the month
Contact: Gary Chaffee
Parents Supporting Parents of Adult Children with IDD
OPEN TO all parents of adults living with hydrocephalus and intellectual and developmental disabilities. Our community is diverse in the many ways and degrees that hydrocephalus impacts our loved ones. For those of us supporting children who are adults with intellectual disability (ID), physical disability, and/or learning challenges (LD), the road can be challenging and lonely. Questions of managing their care, self-advocacy, independent living, and finding success in the workforce all loom large. Join other parents on a similar journey for connection and great discussion.

When:
4th Wednesday of the month
Contact: Jackie Mullock
Flourishing in Mid-Life: Group for Women Age 40- 59!

 

Local Community Networks Of Support For Hydrocephalus

We encourage you to explore the local groups and networks available in your area. Be informed and stay connected!

Facebook

Oregon

Portland (& Vancouver, WA)

Online

info@hydroassoc.org

 

WEBINARS AND EDUCATION

We are pleased to offer educational webinars to help you stay informed and current on the latest news surrounding hydrocephalus. These interactive, free webinars are designed to educate our community on a variety of topics which include normal pressure hydrocephalus (NPH), research, shunt technology, and more.Our webinar series features presentations from medical professionals, researchers, and others with a direct connection to hydrocephalus. Each webinar is moderated by HA’s Support and Education Staff and are archived and accessible following the event in our webinar recordings. Our Support and Education Webinar Series is made possible through the generosity of our industry partner  Medtronic


Future Webinars

Please stay tuned for our 2022 Support and Education Webinar Series and more information regarding our future webinars.


Past Webinars

Congressional Fireside Chat – June 15, 2021

College Transition for Students with Hydrocephalus – December 14, 2021

College Planning for Students Who Learn Differently – March 10, 2021

Descripcion General de la hidrocefalia – July 17, 2021

 

 

National Hydrocephalus Foundation

National Hydrocephalus Foundation

 

What is Hydrocephalus?

Signs-of Hydrocephalus and Shunt Malfunctions

The most common signs are the following: Congenital Signs normally found in infants and children EARLY Enlargement of the head Irritability Lethargic Feeds poorly/Decrease in appetite Recurrent vomiting Prefers to be alone LATER Distended scalp veins High-pitched cry Increased muscle tone Enlarged and bulging fontanel “Sunset Eyes” (downward gaze) Acquired Signs normally found in older …

Normal Pressure Hydrocephalus (NPH) is a disorder, which usually strikes middle age to older adults. In NPH, the ventricles are enlarged, but there is no increase of pressure within the ventricles. The problem is thought to be due to the CSF not being fully reabsorbed by the body (through the arachnoid villi). NPH can be …

Hydrocephalus is diagnosed by a neurological exam and imaging techniques such as an ultrasound, CT scan, MRI, Fetal MRI (also referred to as Fast MRI, and is used on a pregnant woman who is carrying a child diagnosed with hydrocephalus) – and on occasion, a pressure-monitoring system. A doctor will order the appropriate tests according to …

Hydrocephalus Defined

Hydrocephalus is commonly referred to as “water on the brain.” The so-called “water” is actually cerebrospinal fluid (CSF), a clear liquid that looks like water and is produced in the 4 ventricles (cavities) of the brain, connected by narrow pathways.  CSF is in constant production and absorption;  it has a defined pathway from the lateral …

Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood. Here are a few facts about Hydrocephalus: Hydrocephalus is one of the most common birth …

Treatment of Hydrocephalus

Shunts What is a Shunt? A shunt is a mechanical device designed to transport the excess CSF from or near the point of obstruction to a re-absorption site and it is implanted under the skin. There are many different types of shunts, but there is no perfect shunt. The quest continues for one, the shunt …

 

Youth Webinar Series

Hydrocephalus Canada and Holland Bloorview Kids Rehabilitation Hospital are excited to share some helpful information and resources with you! Our Youth Webinar Series  focuses on topics that young people with hydrocephalus and/or spina bifida often have questions about.

Webinar #1 


Melissa Thorne

Presentation by Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“If You’ve Got Questions, We’ve Got Answers”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa Thorne will share her insights as the Youth Facilitator at Holland Bloorview in the Spina Bifida and Spinal Cord Injury Clinic and Youth Engagement department, as well as a person with sbh. Having lived at Holland Bloorview as an inpatient for a year after having multiple orthopedic surgeries in grade 10, Melissa will share her story, her background and explain how she helps kids address challenges like ‘growing up ready’. We will also have a guest speaker! Melissa will follow her presentation with a question and answer session.

 

Webinar #2

               
Steph Di Martino     Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Social Skills and Friendship”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. Steph and Melissa will explore strategies to build conversation skills, talk about where to meet people your age, how to build connections, what to look for in a friend and help you become aware of what you bring to the table of friendship. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #3

       
Kristen English    Melissa Thorne

Presentation by Kristen English, Therapeutic Recreation Specialist and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

 “Community Interaction and Recreation”

Watch on YouTube

November 3 at 7:00 p.m. EDT

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 12-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Kristen English will share her insights as a Certified Therapeutic Recreation Specialist in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. Kristen provides adapted sport and recreation opportunities to children and youth with disabilities including wheelchair basketball, All Abilities Soccer and the Access Boom Sailing program. She is also a Master of Health Evaluation candidate at the University of Waterloo. You can expect Kristen and Melissa to address how to find meaning in recreation and leisure participation, explore sports and recreation in your community as well as look at equipment that can be adapted to your needs. Kristen and Melissa will follow their presentation with a question and answer session.

 

Webinar #4

               
Steph Di Martino      Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Life Skills and Independence – Transition to Adulthood”

Watch on YouTube

November 10 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach at Holland Bloorview. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. You can expect Steph and Melissa to talk about tips and tricks for navigating the adult world, how to grow up ready and get involved in your own health care, learning responsibilities in the home (cooking, laundry, making plans, cleaning) as well as time management and organization. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #5


Melissa Thorne

Steph Di Martino 

Kristen English

Presentation by all speakers from our Youth Webinar Series, including: Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator, Steph Di Martino, Life Skills Coach and Kristen English, Therapeutic Recreation Specialist

“Still Have Questions? We Have Answers!”

Watch on YouTube

November 17 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa, Steph and Kristen from Holland Bloorview will provide participants with a recap and overview of the key points of each webinar in our Youth Webinar Series. Participants will also be given the opportunity to participate in a breakout room with a clinician. Melissa, Steph and Kristen will follow their presentation with a general question and answer session.

Have questions you want to ask any of our presenters? Need more information?
Send your questions in advance of any or all webinars. Please submit your questions to awalters@hydrocephalus.ca or info@hydrocephalus.ca

 

HEALTH AND MENTAL HEALTH

Anxiety, Depression, and Hydrocephalus in Children and Adolescents

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of parents and siblings of individuals with hydrocephalus.

Watch Now >

 

Anxiety, Depression, and Hydrocephalus in Adults and NPH

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of caregivers of individuals with hydrocephalus.

Watch Now >

The Healthiest You: Finding Balance Through Nutrition and Lifestyle Techniques

(You Tube)

Join Bethany Holmes, CHHC, in discussing how to find balance through nutrition and lifestyle techniques. This session will focus on self-care and whole-body wellness for healing. Bethany will share her personal story of going through brain surgery and her recovery and healing process. You will learn the importance of eating real foods to fuel your brain and body, giving you the nutrients and energy you need to feel your best. In this session, you will also learn several lifestyle techniques that will help cultivate self-love and appreciation and how to better cope with anxiety and stress. We will also discuss balancing health with social life, work and everyday responsibilities.

Watch Now >

 

 

Warmline – IOA – Institute on Aging – The Friendship Line – 24/7 – Weekdays and Weekends @ Phone
Jun 28 all-day

THE FRIENDSHIP LINE

24 Hour Telephone Hotline/Warmline

800-971-0016

We support individuals who find connecting within the community challenging

The Institute on Aging’s 24-hour toll-free Friendship Line is the only accredited crisis line in the country for people aged 60 years and older, and adults living with disabilities. We also make on-going outreach calls to lonely older adults. While there are other organizations that respond to the needs of people who may be contemplating suicide, none provides the type of services that IOA’s Friendship Line offers to respond to the public health problem of suicide among the elderly. Knowing that older people do not contact traditional suicide prevention centers on a regular basis even if they are considering suicide, we created the only program nationwide that reaches out to lonely, depressed, isolated, frail and/or suicidal older adults. Our trained volunteers specialize in offering a caring ear and having a friendly conversation with depressed older adults.

The Friendship Line is both a crisis intervention hotline and a warmline for non-emergency emotional support calls. Founded in 1973 by Dr. Patrick Arbore, Director of IOA’s Center for Elderly Suicide Prevention, and accredited by the American Association of Suicidology, Friendship Line provides round-the-clock crisis support services including:

  • Providing emotional support
  • Elder abuse reporting
  • Well-being checks
  • Grief support through assistance and reassurance
  • Active suicide intervention
  • Information and referrals for isolated older adults, and adults living with disabilities

In addition to receiving incoming calls, Friendship Line also offers outreach to eligible callers. We connect with people on a regular basis, and help monitor their physical and mental health concerns. The call-out services act as an intervention to prevent suicide in the long term by improving the quality of life and connectedness of isolated callers. Any aging adult or person living with disabilities, who suffers from depression, loneliness, isolation, anxiousness, or may be thinking about death or suicide, can benefit from completely confidential phone calls with Friendship Line volunteers. Sometimes the road to happiness begins by simply saying hello to someone who cares.

DTWB – Doors To Wellbeing – Peer Specialist Webinar Series – Finding and Sharing Meaningful Work – Last Tuesdays @ Online Via ZOOM
Jun 28 @ 11:00 am – 12:00 pm

 

PEER SPECIALIST WEBINAR SERIES

Tuesday, April 26
11:00am PT
Finding and Sharing Meaningful Work
**Additional seats are available! Live session includes closed captions.

 

Presented by Joanie Keenen

Join us for this presentation on finding where you thrive at work and how to motivate others to seek out meaningful work. Peer specialists will be engaged to reflect on your own experience with employment and learn ways to share that experience with others.

Learning Objectives:

  • Define meaningful work
  • List 3-4 ways to support others in discovering meaningful work
  • Describe 3-4 keys to wellbeing at work
  • Discuss how to share our journey to employment to support others in their journey

 

Meet the Presenter

Joanie Keenen Presenter

 

Joanie Keenen is a statewide trainer for the Oregon Supported Employment Center for Excellence (OSECE). In addition, she is an Advanced Level WRAP Facilitator and a Certified Peer Support Specialist. Joanie has spent her career applying wellness practice approaches through her role as a recreation therapist and WRAP facilitator. She enjoys connecting and collaborating with others to share the message of hope and possibilities. Joanie loves outdoor adventures at the beach or the mountains.

Certificates of Participation for 60 Minute Webinar Available

Registration

Registration is FREE—but you must register to attend!

Jun
29
Wed
01 – Helpline – CBL – Call Blackline – Voice and Text Support for the Black, Black LGBTQ+, Brown, Native and Muslim Community – (800) 604-5841 @ Call/Text
Jun 29 all-day

Call toll-free anytime 24/7

(800) 604-5841

BlackLine® provides a space for peer support, counseling, witnessing and affirming the lived experiences to folxs who are most impacted by systematic oppression with an LGBTQ+ Black Femme Lens.

Call BlackLine® prioritizes BIPOC
(Black, Indigenous and People of Color).

By us for us.

 

AM – All Month – Brain Injury Awareness Month – Hydrocephalus Awareness – Support Groups, Events, Resources
Jun 29 all-day

 

Brain Injury Awareness Month — Hydrocephalus Awareness

Support Groups, Events, Resources, Advocacy

 

Facts about Hydrocephalus


Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood.

Here are a few facts about Hydrocephalus:

  • Hydrocephalus is one of the most common birth defects, each year one out of every 500 births results in hydrocephalus
  • Another 6,000 children annually develop hydrocephalus during the first 2 years of life
  • Brain injury occurs every 15 seconds in this country – and in some cases leads to the development of hydrocephalus
  • There are approximately 75,000 discharges a year from hospitals in the U.S. with a diagnosis of hydrocephalus
  • More than 50% of hydrocephalus cases are congenital
  • 70-90% of children born with spina bifida also develop hydrocephalus
  • CSF shunting procedures account for approximately $100 million in health care spending in the United States alone – half of this amount is spent on shunt revisions
  • In the past 25+ years, death rates associated with hydrocephalus have decreased from 54% to 5%, and the occurrence of intellectual disability has decreased from 62% to 30%
  • Normal Pressure Hydrocephalus affects adults and can cause dementia, difficulty in walking and, urinary incontinence
  • No statistics are kept (by our government), for those who develop

 

HELP LINES, PEER SUPPORT, SUPPORT GROUPS

 

 

The Hydrocephalus Association wants you to know that You Are Not Alone – We Are Here For You!

The Hydrocephalus Association staff and teams of trained volunteers are ready to answer your questions and listen to your concerns,  either by phone or email. Simply click on one of the following links to get connected to a volunteer or staff member for support, information, and connection.

 

PEER SUPPORT

To get connected with an HA Peer, please use this link to connect to a request from, after you complete it  your HA Peer will reach out to you very soon!

FOR ONE-TO-ONE PEER SUPPORT, CLICK HERE

 

CALL THE HA HELPLINE

Call (888) 598-3789 or email info@hydroassoc.org for support, resources, and answers to your questions.

Monday through Friday from 9:00 AM to 5:00 PM Eastern.

EMAIL HA CYBER VOLUNTEERS

Do you have a question about hydrocephalus? Treatment? Ongoing care?  The impact of the condition on all aspects of life? Our cyber volunteers are ready to answer your questions and share their experience via email.

You can submit them via email by clicking here!

 

Virtual Meet-ups

When: Every Saturday
Adults with Hydrocephalus Meet-Up (DC, MD, VA, PA, DE, NJ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
Every Saturday
Contact: Sierra Smith and Sara Curran-Kellogg
Adults with Hydrocephalus Meet-Up (WA, OR, ID, CA, NV, UT, NM, AZ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
1st Friday of the month
Contact: Kelly Varga
Adults with Hydrocephalus Meet-Up (FL, GA, AL, SC, MS)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
4th Sunday of the month
Contact: Jessica Coffaro
Teens Hang-Out
Come meet other teens with the condition! We’ll hang out, maybe play an icebreaker game, talk, and hopefully make some new friends.

When:
1st Sunday of the month
Contact: Olivia Maccoux and Tomas Rodriguez
Young Adults in their 20s Meet-Up
Come hang out with us and meet other young adults in their 20s living with hydrocephalus. We will have fun intros, icebreakers, and conversation. Let’s get to know each other!

When:
Every Saturday
Contact: info@hydroassoc.org
Dallas NPH Meet-Up
Join us for an NPH Community Network get together! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the NPH journey do. We welcome all those living with NPH in the State of Texas and surrounding states!

When:
3rd Wednesday of the month
Contact: Gary Chaffee
Parents Supporting Parents of Adult Children with IDD
OPEN TO all parents of adults living with hydrocephalus and intellectual and developmental disabilities. Our community is diverse in the many ways and degrees that hydrocephalus impacts our loved ones. For those of us supporting children who are adults with intellectual disability (ID), physical disability, and/or learning challenges (LD), the road can be challenging and lonely. Questions of managing their care, self-advocacy, independent living, and finding success in the workforce all loom large. Join other parents on a similar journey for connection and great discussion.

When:
4th Wednesday of the month
Contact: Jackie Mullock
Flourishing in Mid-Life: Group for Women Age 40- 59!

 

Local Community Networks Of Support For Hydrocephalus

We encourage you to explore the local groups and networks available in your area. Be informed and stay connected!

Facebook

Oregon

Portland (& Vancouver, WA)

Online

info@hydroassoc.org

 

WEBINARS AND EDUCATION

We are pleased to offer educational webinars to help you stay informed and current on the latest news surrounding hydrocephalus. These interactive, free webinars are designed to educate our community on a variety of topics which include normal pressure hydrocephalus (NPH), research, shunt technology, and more.Our webinar series features presentations from medical professionals, researchers, and others with a direct connection to hydrocephalus. Each webinar is moderated by HA’s Support and Education Staff and are archived and accessible following the event in our webinar recordings. Our Support and Education Webinar Series is made possible through the generosity of our industry partner  Medtronic


Future Webinars

Please stay tuned for our 2022 Support and Education Webinar Series and more information regarding our future webinars.


Past Webinars

Congressional Fireside Chat – June 15, 2021

College Transition for Students with Hydrocephalus – December 14, 2021

College Planning for Students Who Learn Differently – March 10, 2021

Descripcion General de la hidrocefalia – July 17, 2021

 

 

National Hydrocephalus Foundation

National Hydrocephalus Foundation

 

What is Hydrocephalus?

Signs-of Hydrocephalus and Shunt Malfunctions

The most common signs are the following: Congenital Signs normally found in infants and children EARLY Enlargement of the head Irritability Lethargic Feeds poorly/Decrease in appetite Recurrent vomiting Prefers to be alone LATER Distended scalp veins High-pitched cry Increased muscle tone Enlarged and bulging fontanel “Sunset Eyes” (downward gaze) Acquired Signs normally found in older …

Normal Pressure Hydrocephalus (NPH) is a disorder, which usually strikes middle age to older adults. In NPH, the ventricles are enlarged, but there is no increase of pressure within the ventricles. The problem is thought to be due to the CSF not being fully reabsorbed by the body (through the arachnoid villi). NPH can be …

Hydrocephalus is diagnosed by a neurological exam and imaging techniques such as an ultrasound, CT scan, MRI, Fetal MRI (also referred to as Fast MRI, and is used on a pregnant woman who is carrying a child diagnosed with hydrocephalus) – and on occasion, a pressure-monitoring system. A doctor will order the appropriate tests according to …

Hydrocephalus Defined

Hydrocephalus is commonly referred to as “water on the brain.” The so-called “water” is actually cerebrospinal fluid (CSF), a clear liquid that looks like water and is produced in the 4 ventricles (cavities) of the brain, connected by narrow pathways.  CSF is in constant production and absorption;  it has a defined pathway from the lateral …

Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood. Here are a few facts about Hydrocephalus: Hydrocephalus is one of the most common birth …

Treatment of Hydrocephalus

Shunts What is a Shunt? A shunt is a mechanical device designed to transport the excess CSF from or near the point of obstruction to a re-absorption site and it is implanted under the skin. There are many different types of shunts, but there is no perfect shunt. The quest continues for one, the shunt …

 

Youth Webinar Series

Hydrocephalus Canada and Holland Bloorview Kids Rehabilitation Hospital are excited to share some helpful information and resources with you! Our Youth Webinar Series  focuses on topics that young people with hydrocephalus and/or spina bifida often have questions about.

Webinar #1 


Melissa Thorne

Presentation by Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“If You’ve Got Questions, We’ve Got Answers”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa Thorne will share her insights as the Youth Facilitator at Holland Bloorview in the Spina Bifida and Spinal Cord Injury Clinic and Youth Engagement department, as well as a person with sbh. Having lived at Holland Bloorview as an inpatient for a year after having multiple orthopedic surgeries in grade 10, Melissa will share her story, her background and explain how she helps kids address challenges like ‘growing up ready’. We will also have a guest speaker! Melissa will follow her presentation with a question and answer session.

 

Webinar #2

               
Steph Di Martino     Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Social Skills and Friendship”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. Steph and Melissa will explore strategies to build conversation skills, talk about where to meet people your age, how to build connections, what to look for in a friend and help you become aware of what you bring to the table of friendship. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #3

       
Kristen English    Melissa Thorne

Presentation by Kristen English, Therapeutic Recreation Specialist and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

 “Community Interaction and Recreation”

Watch on YouTube

November 3 at 7:00 p.m. EDT

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 12-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Kristen English will share her insights as a Certified Therapeutic Recreation Specialist in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. Kristen provides adapted sport and recreation opportunities to children and youth with disabilities including wheelchair basketball, All Abilities Soccer and the Access Boom Sailing program. She is also a Master of Health Evaluation candidate at the University of Waterloo. You can expect Kristen and Melissa to address how to find meaning in recreation and leisure participation, explore sports and recreation in your community as well as look at equipment that can be adapted to your needs. Kristen and Melissa will follow their presentation with a question and answer session.

 

Webinar #4

               
Steph Di Martino      Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Life Skills and Independence – Transition to Adulthood”

Watch on YouTube

November 10 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach at Holland Bloorview. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. You can expect Steph and Melissa to talk about tips and tricks for navigating the adult world, how to grow up ready and get involved in your own health care, learning responsibilities in the home (cooking, laundry, making plans, cleaning) as well as time management and organization. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #5


Melissa Thorne

Steph Di Martino 

Kristen English

Presentation by all speakers from our Youth Webinar Series, including: Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator, Steph Di Martino, Life Skills Coach and Kristen English, Therapeutic Recreation Specialist

“Still Have Questions? We Have Answers!”

Watch on YouTube

November 17 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa, Steph and Kristen from Holland Bloorview will provide participants with a recap and overview of the key points of each webinar in our Youth Webinar Series. Participants will also be given the opportunity to participate in a breakout room with a clinician. Melissa, Steph and Kristen will follow their presentation with a general question and answer session.

Have questions you want to ask any of our presenters? Need more information?
Send your questions in advance of any or all webinars. Please submit your questions to awalters@hydrocephalus.ca or info@hydrocephalus.ca

 

HEALTH AND MENTAL HEALTH

Anxiety, Depression, and Hydrocephalus in Children and Adolescents

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of parents and siblings of individuals with hydrocephalus.

Watch Now >

 

Anxiety, Depression, and Hydrocephalus in Adults and NPH

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of caregivers of individuals with hydrocephalus.

Watch Now >

The Healthiest You: Finding Balance Through Nutrition and Lifestyle Techniques

(You Tube)

Join Bethany Holmes, CHHC, in discussing how to find balance through nutrition and lifestyle techniques. This session will focus on self-care and whole-body wellness for healing. Bethany will share her personal story of going through brain surgery and her recovery and healing process. You will learn the importance of eating real foods to fuel your brain and body, giving you the nutrients and energy you need to feel your best. In this session, you will also learn several lifestyle techniques that will help cultivate self-love and appreciation and how to better cope with anxiety and stress. We will also discuss balancing health with social life, work and everyday responsibilities.

Watch Now >

 

 

Warmline – IOA – Institute on Aging – The Friendship Line – 24/7 – Weekdays and Weekends @ Phone
Jun 29 all-day

THE FRIENDSHIP LINE

24 Hour Telephone Hotline/Warmline

800-971-0016

We support individuals who find connecting within the community challenging

The Institute on Aging’s 24-hour toll-free Friendship Line is the only accredited crisis line in the country for people aged 60 years and older, and adults living with disabilities. We also make on-going outreach calls to lonely older adults. While there are other organizations that respond to the needs of people who may be contemplating suicide, none provides the type of services that IOA’s Friendship Line offers to respond to the public health problem of suicide among the elderly. Knowing that older people do not contact traditional suicide prevention centers on a regular basis even if they are considering suicide, we created the only program nationwide that reaches out to lonely, depressed, isolated, frail and/or suicidal older adults. Our trained volunteers specialize in offering a caring ear and having a friendly conversation with depressed older adults.

The Friendship Line is both a crisis intervention hotline and a warmline for non-emergency emotional support calls. Founded in 1973 by Dr. Patrick Arbore, Director of IOA’s Center for Elderly Suicide Prevention, and accredited by the American Association of Suicidology, Friendship Line provides round-the-clock crisis support services including:

  • Providing emotional support
  • Elder abuse reporting
  • Well-being checks
  • Grief support through assistance and reassurance
  • Active suicide intervention
  • Information and referrals for isolated older adults, and adults living with disabilities

In addition to receiving incoming calls, Friendship Line also offers outreach to eligible callers. We connect with people on a regular basis, and help monitor their physical and mental health concerns. The call-out services act as an intervention to prevent suicide in the long term by improving the quality of life and connectedness of isolated callers. Any aging adult or person living with disabilities, who suffers from depression, loneliness, isolation, anxiousness, or may be thinking about death or suicide, can benefit from completely confidential phone calls with Friendship Line volunteers. Sometimes the road to happiness begins by simply saying hello to someone who cares.

Jun
30
Thu
01 – Helpline – CBL – Call Blackline – Voice and Text Support for the Black, Black LGBTQ+, Brown, Native and Muslim Community – (800) 604-5841 @ Call/Text
Jun 30 all-day

Call toll-free anytime 24/7

(800) 604-5841

BlackLine® provides a space for peer support, counseling, witnessing and affirming the lived experiences to folxs who are most impacted by systematic oppression with an LGBTQ+ Black Femme Lens.

Call BlackLine® prioritizes BIPOC
(Black, Indigenous and People of Color).

By us for us.

 

AM – All Month – Brain Injury Awareness Month – Hydrocephalus Awareness – Support Groups, Events, Resources
Jun 30 all-day

 

Brain Injury Awareness Month — Hydrocephalus Awareness

Support Groups, Events, Resources, Advocacy

 

Facts about Hydrocephalus


Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood.

Here are a few facts about Hydrocephalus:

  • Hydrocephalus is one of the most common birth defects, each year one out of every 500 births results in hydrocephalus
  • Another 6,000 children annually develop hydrocephalus during the first 2 years of life
  • Brain injury occurs every 15 seconds in this country – and in some cases leads to the development of hydrocephalus
  • There are approximately 75,000 discharges a year from hospitals in the U.S. with a diagnosis of hydrocephalus
  • More than 50% of hydrocephalus cases are congenital
  • 70-90% of children born with spina bifida also develop hydrocephalus
  • CSF shunting procedures account for approximately $100 million in health care spending in the United States alone – half of this amount is spent on shunt revisions
  • In the past 25+ years, death rates associated with hydrocephalus have decreased from 54% to 5%, and the occurrence of intellectual disability has decreased from 62% to 30%
  • Normal Pressure Hydrocephalus affects adults and can cause dementia, difficulty in walking and, urinary incontinence
  • No statistics are kept (by our government), for those who develop

 

HELP LINES, PEER SUPPORT, SUPPORT GROUPS

 

 

The Hydrocephalus Association wants you to know that You Are Not Alone – We Are Here For You!

The Hydrocephalus Association staff and teams of trained volunteers are ready to answer your questions and listen to your concerns,  either by phone or email. Simply click on one of the following links to get connected to a volunteer or staff member for support, information, and connection.

 

PEER SUPPORT

To get connected with an HA Peer, please use this link to connect to a request from, after you complete it  your HA Peer will reach out to you very soon!

FOR ONE-TO-ONE PEER SUPPORT, CLICK HERE

 

CALL THE HA HELPLINE

Call (888) 598-3789 or email info@hydroassoc.org for support, resources, and answers to your questions.

Monday through Friday from 9:00 AM to 5:00 PM Eastern.

EMAIL HA CYBER VOLUNTEERS

Do you have a question about hydrocephalus? Treatment? Ongoing care?  The impact of the condition on all aspects of life? Our cyber volunteers are ready to answer your questions and share their experience via email.

You can submit them via email by clicking here!

 

Virtual Meet-ups

When: Every Saturday
Adults with Hydrocephalus Meet-Up (DC, MD, VA, PA, DE, NJ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
Every Saturday
Contact: Sierra Smith and Sara Curran-Kellogg
Adults with Hydrocephalus Meet-Up (WA, OR, ID, CA, NV, UT, NM, AZ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
1st Friday of the month
Contact: Kelly Varga
Adults with Hydrocephalus Meet-Up (FL, GA, AL, SC, MS)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
4th Sunday of the month
Contact: Jessica Coffaro
Teens Hang-Out
Come meet other teens with the condition! We’ll hang out, maybe play an icebreaker game, talk, and hopefully make some new friends.

When:
1st Sunday of the month
Contact: Olivia Maccoux and Tomas Rodriguez
Young Adults in their 20s Meet-Up
Come hang out with us and meet other young adults in their 20s living with hydrocephalus. We will have fun intros, icebreakers, and conversation. Let’s get to know each other!

When:
Every Saturday
Contact: info@hydroassoc.org
Dallas NPH Meet-Up
Join us for an NPH Community Network get together! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the NPH journey do. We welcome all those living with NPH in the State of Texas and surrounding states!

When:
3rd Wednesday of the month
Contact: Gary Chaffee
Parents Supporting Parents of Adult Children with IDD
OPEN TO all parents of adults living with hydrocephalus and intellectual and developmental disabilities. Our community is diverse in the many ways and degrees that hydrocephalus impacts our loved ones. For those of us supporting children who are adults with intellectual disability (ID), physical disability, and/or learning challenges (LD), the road can be challenging and lonely. Questions of managing their care, self-advocacy, independent living, and finding success in the workforce all loom large. Join other parents on a similar journey for connection and great discussion.

When:
4th Wednesday of the month
Contact: Jackie Mullock
Flourishing in Mid-Life: Group for Women Age 40- 59!

 

Local Community Networks Of Support For Hydrocephalus

We encourage you to explore the local groups and networks available in your area. Be informed and stay connected!

Facebook

Oregon

Portland (& Vancouver, WA)

Online

info@hydroassoc.org

 

WEBINARS AND EDUCATION

We are pleased to offer educational webinars to help you stay informed and current on the latest news surrounding hydrocephalus. These interactive, free webinars are designed to educate our community on a variety of topics which include normal pressure hydrocephalus (NPH), research, shunt technology, and more.Our webinar series features presentations from medical professionals, researchers, and others with a direct connection to hydrocephalus. Each webinar is moderated by HA’s Support and Education Staff and are archived and accessible following the event in our webinar recordings. Our Support and Education Webinar Series is made possible through the generosity of our industry partner  Medtronic


Future Webinars

Please stay tuned for our 2022 Support and Education Webinar Series and more information regarding our future webinars.


Past Webinars

Congressional Fireside Chat – June 15, 2021

College Transition for Students with Hydrocephalus – December 14, 2021

College Planning for Students Who Learn Differently – March 10, 2021

Descripcion General de la hidrocefalia – July 17, 2021

 

 

National Hydrocephalus Foundation

National Hydrocephalus Foundation

 

What is Hydrocephalus?

Signs-of Hydrocephalus and Shunt Malfunctions

The most common signs are the following: Congenital Signs normally found in infants and children EARLY Enlargement of the head Irritability Lethargic Feeds poorly/Decrease in appetite Recurrent vomiting Prefers to be alone LATER Distended scalp veins High-pitched cry Increased muscle tone Enlarged and bulging fontanel “Sunset Eyes” (downward gaze) Acquired Signs normally found in older …

Normal Pressure Hydrocephalus (NPH) is a disorder, which usually strikes middle age to older adults. In NPH, the ventricles are enlarged, but there is no increase of pressure within the ventricles. The problem is thought to be due to the CSF not being fully reabsorbed by the body (through the arachnoid villi). NPH can be …

Hydrocephalus is diagnosed by a neurological exam and imaging techniques such as an ultrasound, CT scan, MRI, Fetal MRI (also referred to as Fast MRI, and is used on a pregnant woman who is carrying a child diagnosed with hydrocephalus) – and on occasion, a pressure-monitoring system. A doctor will order the appropriate tests according to …

Hydrocephalus Defined

Hydrocephalus is commonly referred to as “water on the brain.” The so-called “water” is actually cerebrospinal fluid (CSF), a clear liquid that looks like water and is produced in the 4 ventricles (cavities) of the brain, connected by narrow pathways.  CSF is in constant production and absorption;  it has a defined pathway from the lateral …

Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood. Here are a few facts about Hydrocephalus: Hydrocephalus is one of the most common birth …

Treatment of Hydrocephalus

Shunts What is a Shunt? A shunt is a mechanical device designed to transport the excess CSF from or near the point of obstruction to a re-absorption site and it is implanted under the skin. There are many different types of shunts, but there is no perfect shunt. The quest continues for one, the shunt …

 

Youth Webinar Series

Hydrocephalus Canada and Holland Bloorview Kids Rehabilitation Hospital are excited to share some helpful information and resources with you! Our Youth Webinar Series  focuses on topics that young people with hydrocephalus and/or spina bifida often have questions about.

Webinar #1 


Melissa Thorne

Presentation by Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“If You’ve Got Questions, We’ve Got Answers”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa Thorne will share her insights as the Youth Facilitator at Holland Bloorview in the Spina Bifida and Spinal Cord Injury Clinic and Youth Engagement department, as well as a person with sbh. Having lived at Holland Bloorview as an inpatient for a year after having multiple orthopedic surgeries in grade 10, Melissa will share her story, her background and explain how she helps kids address challenges like ‘growing up ready’. We will also have a guest speaker! Melissa will follow her presentation with a question and answer session.

 

Webinar #2

               
Steph Di Martino     Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Social Skills and Friendship”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. Steph and Melissa will explore strategies to build conversation skills, talk about where to meet people your age, how to build connections, what to look for in a friend and help you become aware of what you bring to the table of friendship. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #3

       
Kristen English    Melissa Thorne

Presentation by Kristen English, Therapeutic Recreation Specialist and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

 “Community Interaction and Recreation”

Watch on YouTube

November 3 at 7:00 p.m. EDT

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 12-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Kristen English will share her insights as a Certified Therapeutic Recreation Specialist in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. Kristen provides adapted sport and recreation opportunities to children and youth with disabilities including wheelchair basketball, All Abilities Soccer and the Access Boom Sailing program. She is also a Master of Health Evaluation candidate at the University of Waterloo. You can expect Kristen and Melissa to address how to find meaning in recreation and leisure participation, explore sports and recreation in your community as well as look at equipment that can be adapted to your needs. Kristen and Melissa will follow their presentation with a question and answer session.

 

Webinar #4

               
Steph Di Martino      Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Life Skills and Independence – Transition to Adulthood”

Watch on YouTube

November 10 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach at Holland Bloorview. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. You can expect Steph and Melissa to talk about tips and tricks for navigating the adult world, how to grow up ready and get involved in your own health care, learning responsibilities in the home (cooking, laundry, making plans, cleaning) as well as time management and organization. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #5


Melissa Thorne

Steph Di Martino 

Kristen English

Presentation by all speakers from our Youth Webinar Series, including: Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator, Steph Di Martino, Life Skills Coach and Kristen English, Therapeutic Recreation Specialist

“Still Have Questions? We Have Answers!”

Watch on YouTube

November 17 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa, Steph and Kristen from Holland Bloorview will provide participants with a recap and overview of the key points of each webinar in our Youth Webinar Series. Participants will also be given the opportunity to participate in a breakout room with a clinician. Melissa, Steph and Kristen will follow their presentation with a general question and answer session.

Have questions you want to ask any of our presenters? Need more information?
Send your questions in advance of any or all webinars. Please submit your questions to awalters@hydrocephalus.ca or info@hydrocephalus.ca

 

HEALTH AND MENTAL HEALTH

Anxiety, Depression, and Hydrocephalus in Children and Adolescents

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of parents and siblings of individuals with hydrocephalus.

Watch Now >

 

Anxiety, Depression, and Hydrocephalus in Adults and NPH

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of caregivers of individuals with hydrocephalus.

Watch Now >

The Healthiest You: Finding Balance Through Nutrition and Lifestyle Techniques

(You Tube)

Join Bethany Holmes, CHHC, in discussing how to find balance through nutrition and lifestyle techniques. This session will focus on self-care and whole-body wellness for healing. Bethany will share her personal story of going through brain surgery and her recovery and healing process. You will learn the importance of eating real foods to fuel your brain and body, giving you the nutrients and energy you need to feel your best. In this session, you will also learn several lifestyle techniques that will help cultivate self-love and appreciation and how to better cope with anxiety and stress. We will also discuss balancing health with social life, work and everyday responsibilities.

Watch Now >

 

 

Warmline – IOA – Institute on Aging – The Friendship Line – 24/7 – Weekdays and Weekends @ Phone
Jun 30 all-day

THE FRIENDSHIP LINE

24 Hour Telephone Hotline/Warmline

800-971-0016

We support individuals who find connecting within the community challenging

The Institute on Aging’s 24-hour toll-free Friendship Line is the only accredited crisis line in the country for people aged 60 years and older, and adults living with disabilities. We also make on-going outreach calls to lonely older adults. While there are other organizations that respond to the needs of people who may be contemplating suicide, none provides the type of services that IOA’s Friendship Line offers to respond to the public health problem of suicide among the elderly. Knowing that older people do not contact traditional suicide prevention centers on a regular basis even if they are considering suicide, we created the only program nationwide that reaches out to lonely, depressed, isolated, frail and/or suicidal older adults. Our trained volunteers specialize in offering a caring ear and having a friendly conversation with depressed older adults.

The Friendship Line is both a crisis intervention hotline and a warmline for non-emergency emotional support calls. Founded in 1973 by Dr. Patrick Arbore, Director of IOA’s Center for Elderly Suicide Prevention, and accredited by the American Association of Suicidology, Friendship Line provides round-the-clock crisis support services including:

  • Providing emotional support
  • Elder abuse reporting
  • Well-being checks
  • Grief support through assistance and reassurance
  • Active suicide intervention
  • Information and referrals for isolated older adults, and adults living with disabilities

In addition to receiving incoming calls, Friendship Line also offers outreach to eligible callers. We connect with people on a regular basis, and help monitor their physical and mental health concerns. The call-out services act as an intervention to prevent suicide in the long term by improving the quality of life and connectedness of isolated callers. Any aging adult or person living with disabilities, who suffers from depression, loneliness, isolation, anxiousness, or may be thinking about death or suicide, can benefit from completely confidential phone calls with Friendship Line volunteers. Sometimes the road to happiness begins by simply saying hello to someone who cares.

Jul
1
Fri
01 – Helpline – CBL – Call Blackline – Voice and Text Support for the Black, Black LGBTQ+, Brown, Native and Muslim Community – (800) 604-5841 @ Call/Text
Jul 1 all-day

Call toll-free anytime 24/7

(800) 604-5841

BlackLine® provides a space for peer support, counseling, witnessing and affirming the lived experiences to folxs who are most impacted by systematic oppression with an LGBTQ+ Black Femme Lens.

Call BlackLine® prioritizes BIPOC
(Black, Indigenous and People of Color).

By us for us.

 

AM – All Month – Brain Injury Awareness Month – Hydrocephalus Awareness – Support Groups, Events, Resources
Jul 1 all-day

 

Brain Injury Awareness Month — Hydrocephalus Awareness

Support Groups, Events, Resources, Advocacy

 

Facts about Hydrocephalus


Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood.

Here are a few facts about Hydrocephalus:

  • Hydrocephalus is one of the most common birth defects, each year one out of every 500 births results in hydrocephalus
  • Another 6,000 children annually develop hydrocephalus during the first 2 years of life
  • Brain injury occurs every 15 seconds in this country – and in some cases leads to the development of hydrocephalus
  • There are approximately 75,000 discharges a year from hospitals in the U.S. with a diagnosis of hydrocephalus
  • More than 50% of hydrocephalus cases are congenital
  • 70-90% of children born with spina bifida also develop hydrocephalus
  • CSF shunting procedures account for approximately $100 million in health care spending in the United States alone – half of this amount is spent on shunt revisions
  • In the past 25+ years, death rates associated with hydrocephalus have decreased from 54% to 5%, and the occurrence of intellectual disability has decreased from 62% to 30%
  • Normal Pressure Hydrocephalus affects adults and can cause dementia, difficulty in walking and, urinary incontinence
  • No statistics are kept (by our government), for those who develop

 

HELP LINES, PEER SUPPORT, SUPPORT GROUPS

 

 

The Hydrocephalus Association wants you to know that You Are Not Alone – We Are Here For You!

The Hydrocephalus Association staff and teams of trained volunteers are ready to answer your questions and listen to your concerns,  either by phone or email. Simply click on one of the following links to get connected to a volunteer or staff member for support, information, and connection.

 

PEER SUPPORT

To get connected with an HA Peer, please use this link to connect to a request from, after you complete it  your HA Peer will reach out to you very soon!

FOR ONE-TO-ONE PEER SUPPORT, CLICK HERE

 

CALL THE HA HELPLINE

Call (888) 598-3789 or email info@hydroassoc.org for support, resources, and answers to your questions.

Monday through Friday from 9:00 AM to 5:00 PM Eastern.

EMAIL HA CYBER VOLUNTEERS

Do you have a question about hydrocephalus? Treatment? Ongoing care?  The impact of the condition on all aspects of life? Our cyber volunteers are ready to answer your questions and share their experience via email.

You can submit them via email by clicking here!

 

Virtual Meet-ups

When: Every Saturday
Adults with Hydrocephalus Meet-Up (DC, MD, VA, PA, DE, NJ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
Every Saturday
Contact: Sierra Smith and Sara Curran-Kellogg
Adults with Hydrocephalus Meet-Up (WA, OR, ID, CA, NV, UT, NM, AZ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
1st Friday of the month
Contact: Kelly Varga
Adults with Hydrocephalus Meet-Up (FL, GA, AL, SC, MS)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
4th Sunday of the month
Contact: Jessica Coffaro
Teens Hang-Out
Come meet other teens with the condition! We’ll hang out, maybe play an icebreaker game, talk, and hopefully make some new friends.

When:
1st Sunday of the month
Contact: Olivia Maccoux and Tomas Rodriguez
Young Adults in their 20s Meet-Up
Come hang out with us and meet other young adults in their 20s living with hydrocephalus. We will have fun intros, icebreakers, and conversation. Let’s get to know each other!

When:
Every Saturday
Contact: info@hydroassoc.org
Dallas NPH Meet-Up
Join us for an NPH Community Network get together! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the NPH journey do. We welcome all those living with NPH in the State of Texas and surrounding states!

When:
3rd Wednesday of the month
Contact: Gary Chaffee
Parents Supporting Parents of Adult Children with IDD
OPEN TO all parents of adults living with hydrocephalus and intellectual and developmental disabilities. Our community is diverse in the many ways and degrees that hydrocephalus impacts our loved ones. For those of us supporting children who are adults with intellectual disability (ID), physical disability, and/or learning challenges (LD), the road can be challenging and lonely. Questions of managing their care, self-advocacy, independent living, and finding success in the workforce all loom large. Join other parents on a similar journey for connection and great discussion.

When:
4th Wednesday of the month
Contact: Jackie Mullock
Flourishing in Mid-Life: Group for Women Age 40- 59!

 

Local Community Networks Of Support For Hydrocephalus

We encourage you to explore the local groups and networks available in your area. Be informed and stay connected!

Facebook

Oregon

Portland (& Vancouver, WA)

Online

info@hydroassoc.org

 

WEBINARS AND EDUCATION

We are pleased to offer educational webinars to help you stay informed and current on the latest news surrounding hydrocephalus. These interactive, free webinars are designed to educate our community on a variety of topics which include normal pressure hydrocephalus (NPH), research, shunt technology, and more.Our webinar series features presentations from medical professionals, researchers, and others with a direct connection to hydrocephalus. Each webinar is moderated by HA’s Support and Education Staff and are archived and accessible following the event in our webinar recordings. Our Support and Education Webinar Series is made possible through the generosity of our industry partner  Medtronic


Future Webinars

Please stay tuned for our 2022 Support and Education Webinar Series and more information regarding our future webinars.


Past Webinars

Congressional Fireside Chat – June 15, 2021

College Transition for Students with Hydrocephalus – December 14, 2021

College Planning for Students Who Learn Differently – March 10, 2021

Descripcion General de la hidrocefalia – July 17, 2021

 

 

National Hydrocephalus Foundation

National Hydrocephalus Foundation

 

What is Hydrocephalus?

Signs-of Hydrocephalus and Shunt Malfunctions

The most common signs are the following: Congenital Signs normally found in infants and children EARLY Enlargement of the head Irritability Lethargic Feeds poorly/Decrease in appetite Recurrent vomiting Prefers to be alone LATER Distended scalp veins High-pitched cry Increased muscle tone Enlarged and bulging fontanel “Sunset Eyes” (downward gaze) Acquired Signs normally found in older …

Normal Pressure Hydrocephalus (NPH) is a disorder, which usually strikes middle age to older adults. In NPH, the ventricles are enlarged, but there is no increase of pressure within the ventricles. The problem is thought to be due to the CSF not being fully reabsorbed by the body (through the arachnoid villi). NPH can be …

Hydrocephalus is diagnosed by a neurological exam and imaging techniques such as an ultrasound, CT scan, MRI, Fetal MRI (also referred to as Fast MRI, and is used on a pregnant woman who is carrying a child diagnosed with hydrocephalus) – and on occasion, a pressure-monitoring system. A doctor will order the appropriate tests according to …

Hydrocephalus Defined

Hydrocephalus is commonly referred to as “water on the brain.” The so-called “water” is actually cerebrospinal fluid (CSF), a clear liquid that looks like water and is produced in the 4 ventricles (cavities) of the brain, connected by narrow pathways.  CSF is in constant production and absorption;  it has a defined pathway from the lateral …

Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood. Here are a few facts about Hydrocephalus: Hydrocephalus is one of the most common birth …

Treatment of Hydrocephalus

Shunts What is a Shunt? A shunt is a mechanical device designed to transport the excess CSF from or near the point of obstruction to a re-absorption site and it is implanted under the skin. There are many different types of shunts, but there is no perfect shunt. The quest continues for one, the shunt …

 

Youth Webinar Series

Hydrocephalus Canada and Holland Bloorview Kids Rehabilitation Hospital are excited to share some helpful information and resources with you! Our Youth Webinar Series  focuses on topics that young people with hydrocephalus and/or spina bifida often have questions about.

Webinar #1 


Melissa Thorne

Presentation by Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“If You’ve Got Questions, We’ve Got Answers”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa Thorne will share her insights as the Youth Facilitator at Holland Bloorview in the Spina Bifida and Spinal Cord Injury Clinic and Youth Engagement department, as well as a person with sbh. Having lived at Holland Bloorview as an inpatient for a year after having multiple orthopedic surgeries in grade 10, Melissa will share her story, her background and explain how she helps kids address challenges like ‘growing up ready’. We will also have a guest speaker! Melissa will follow her presentation with a question and answer session.

 

Webinar #2

               
Steph Di Martino     Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Social Skills and Friendship”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. Steph and Melissa will explore strategies to build conversation skills, talk about where to meet people your age, how to build connections, what to look for in a friend and help you become aware of what you bring to the table of friendship. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #3

       
Kristen English    Melissa Thorne

Presentation by Kristen English, Therapeutic Recreation Specialist and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

 “Community Interaction and Recreation”

Watch on YouTube

November 3 at 7:00 p.m. EDT

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 12-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Kristen English will share her insights as a Certified Therapeutic Recreation Specialist in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. Kristen provides adapted sport and recreation opportunities to children and youth with disabilities including wheelchair basketball, All Abilities Soccer and the Access Boom Sailing program. She is also a Master of Health Evaluation candidate at the University of Waterloo. You can expect Kristen and Melissa to address how to find meaning in recreation and leisure participation, explore sports and recreation in your community as well as look at equipment that can be adapted to your needs. Kristen and Melissa will follow their presentation with a question and answer session.

 

Webinar #4

               
Steph Di Martino      Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Life Skills and Independence – Transition to Adulthood”

Watch on YouTube

November 10 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach at Holland Bloorview. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. You can expect Steph and Melissa to talk about tips and tricks for navigating the adult world, how to grow up ready and get involved in your own health care, learning responsibilities in the home (cooking, laundry, making plans, cleaning) as well as time management and organization. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #5


Melissa Thorne

Steph Di Martino 

Kristen English

Presentation by all speakers from our Youth Webinar Series, including: Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator, Steph Di Martino, Life Skills Coach and Kristen English, Therapeutic Recreation Specialist

“Still Have Questions? We Have Answers!”

Watch on YouTube

November 17 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa, Steph and Kristen from Holland Bloorview will provide participants with a recap and overview of the key points of each webinar in our Youth Webinar Series. Participants will also be given the opportunity to participate in a breakout room with a clinician. Melissa, Steph and Kristen will follow their presentation with a general question and answer session.

Have questions you want to ask any of our presenters? Need more information?
Send your questions in advance of any or all webinars. Please submit your questions to awalters@hydrocephalus.ca or info@hydrocephalus.ca

 

HEALTH AND MENTAL HEALTH

Anxiety, Depression, and Hydrocephalus in Children and Adolescents

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of parents and siblings of individuals with hydrocephalus.

Watch Now >

 

Anxiety, Depression, and Hydrocephalus in Adults and NPH

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of caregivers of individuals with hydrocephalus.

Watch Now >

The Healthiest You: Finding Balance Through Nutrition and Lifestyle Techniques

(You Tube)

Join Bethany Holmes, CHHC, in discussing how to find balance through nutrition and lifestyle techniques. This session will focus on self-care and whole-body wellness for healing. Bethany will share her personal story of going through brain surgery and her recovery and healing process. You will learn the importance of eating real foods to fuel your brain and body, giving you the nutrients and energy you need to feel your best. In this session, you will also learn several lifestyle techniques that will help cultivate self-love and appreciation and how to better cope with anxiety and stress. We will also discuss balancing health with social life, work and everyday responsibilities.

Watch Now >

 

 

Warmline – IOA – Institute on Aging – The Friendship Line – 24/7 – Weekdays and Weekends @ Phone
Jul 1 all-day

THE FRIENDSHIP LINE

24 Hour Telephone Hotline/Warmline

800-971-0016

We support individuals who find connecting within the community challenging

The Institute on Aging’s 24-hour toll-free Friendship Line is the only accredited crisis line in the country for people aged 60 years and older, and adults living with disabilities. We also make on-going outreach calls to lonely older adults. While there are other organizations that respond to the needs of people who may be contemplating suicide, none provides the type of services that IOA’s Friendship Line offers to respond to the public health problem of suicide among the elderly. Knowing that older people do not contact traditional suicide prevention centers on a regular basis even if they are considering suicide, we created the only program nationwide that reaches out to lonely, depressed, isolated, frail and/or suicidal older adults. Our trained volunteers specialize in offering a caring ear and having a friendly conversation with depressed older adults.

The Friendship Line is both a crisis intervention hotline and a warmline for non-emergency emotional support calls. Founded in 1973 by Dr. Patrick Arbore, Director of IOA’s Center for Elderly Suicide Prevention, and accredited by the American Association of Suicidology, Friendship Line provides round-the-clock crisis support services including:

  • Providing emotional support
  • Elder abuse reporting
  • Well-being checks
  • Grief support through assistance and reassurance
  • Active suicide intervention
  • Information and referrals for isolated older adults, and adults living with disabilities

In addition to receiving incoming calls, Friendship Line also offers outreach to eligible callers. We connect with people on a regular basis, and help monitor their physical and mental health concerns. The call-out services act as an intervention to prevent suicide in the long term by improving the quality of life and connectedness of isolated callers. Any aging adult or person living with disabilities, who suffers from depression, loneliness, isolation, anxiousness, or may be thinking about death or suicide, can benefit from completely confidential phone calls with Friendship Line volunteers. Sometimes the road to happiness begins by simply saying hello to someone who cares.

Jul
2
Sat
01 – Helpline – CBL – Call Blackline – Voice and Text Support for the Black, Black LGBTQ+, Brown, Native and Muslim Community – (800) 604-5841 @ Call/Text
Jul 2 all-day

Call toll-free anytime 24/7

(800) 604-5841

BlackLine® provides a space for peer support, counseling, witnessing and affirming the lived experiences to folxs who are most impacted by systematic oppression with an LGBTQ+ Black Femme Lens.

Call BlackLine® prioritizes BIPOC
(Black, Indigenous and People of Color).

By us for us.

 

AM – All Month – Brain Injury Awareness Month – Hydrocephalus Awareness – Support Groups, Events, Resources
Jul 2 all-day

 

Brain Injury Awareness Month — Hydrocephalus Awareness

Support Groups, Events, Resources, Advocacy

 

Facts about Hydrocephalus


Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood.

Here are a few facts about Hydrocephalus:

  • Hydrocephalus is one of the most common birth defects, each year one out of every 500 births results in hydrocephalus
  • Another 6,000 children annually develop hydrocephalus during the first 2 years of life
  • Brain injury occurs every 15 seconds in this country – and in some cases leads to the development of hydrocephalus
  • There are approximately 75,000 discharges a year from hospitals in the U.S. with a diagnosis of hydrocephalus
  • More than 50% of hydrocephalus cases are congenital
  • 70-90% of children born with spina bifida also develop hydrocephalus
  • CSF shunting procedures account for approximately $100 million in health care spending in the United States alone – half of this amount is spent on shunt revisions
  • In the past 25+ years, death rates associated with hydrocephalus have decreased from 54% to 5%, and the occurrence of intellectual disability has decreased from 62% to 30%
  • Normal Pressure Hydrocephalus affects adults and can cause dementia, difficulty in walking and, urinary incontinence
  • No statistics are kept (by our government), for those who develop

 

HELP LINES, PEER SUPPORT, SUPPORT GROUPS

 

 

The Hydrocephalus Association wants you to know that You Are Not Alone – We Are Here For You!

The Hydrocephalus Association staff and teams of trained volunteers are ready to answer your questions and listen to your concerns,  either by phone or email. Simply click on one of the following links to get connected to a volunteer or staff member for support, information, and connection.

 

PEER SUPPORT

To get connected with an HA Peer, please use this link to connect to a request from, after you complete it  your HA Peer will reach out to you very soon!

FOR ONE-TO-ONE PEER SUPPORT, CLICK HERE

 

CALL THE HA HELPLINE

Call (888) 598-3789 or email info@hydroassoc.org for support, resources, and answers to your questions.

Monday through Friday from 9:00 AM to 5:00 PM Eastern.

EMAIL HA CYBER VOLUNTEERS

Do you have a question about hydrocephalus? Treatment? Ongoing care?  The impact of the condition on all aspects of life? Our cyber volunteers are ready to answer your questions and share their experience via email.

You can submit them via email by clicking here!

 

Virtual Meet-ups

When: Every Saturday
Adults with Hydrocephalus Meet-Up (DC, MD, VA, PA, DE, NJ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
Every Saturday
Contact: Sierra Smith and Sara Curran-Kellogg
Adults with Hydrocephalus Meet-Up (WA, OR, ID, CA, NV, UT, NM, AZ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
1st Friday of the month
Contact: Kelly Varga
Adults with Hydrocephalus Meet-Up (FL, GA, AL, SC, MS)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
4th Sunday of the month
Contact: Jessica Coffaro
Teens Hang-Out
Come meet other teens with the condition! We’ll hang out, maybe play an icebreaker game, talk, and hopefully make some new friends.

When:
1st Sunday of the month
Contact: Olivia Maccoux and Tomas Rodriguez
Young Adults in their 20s Meet-Up
Come hang out with us and meet other young adults in their 20s living with hydrocephalus. We will have fun intros, icebreakers, and conversation. Let’s get to know each other!

When:
Every Saturday
Contact: info@hydroassoc.org
Dallas NPH Meet-Up
Join us for an NPH Community Network get together! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the NPH journey do. We welcome all those living with NPH in the State of Texas and surrounding states!

When:
3rd Wednesday of the month
Contact: Gary Chaffee
Parents Supporting Parents of Adult Children with IDD
OPEN TO all parents of adults living with hydrocephalus and intellectual and developmental disabilities. Our community is diverse in the many ways and degrees that hydrocephalus impacts our loved ones. For those of us supporting children who are adults with intellectual disability (ID), physical disability, and/or learning challenges (LD), the road can be challenging and lonely. Questions of managing their care, self-advocacy, independent living, and finding success in the workforce all loom large. Join other parents on a similar journey for connection and great discussion.

When:
4th Wednesday of the month
Contact: Jackie Mullock
Flourishing in Mid-Life: Group for Women Age 40- 59!

 

Local Community Networks Of Support For Hydrocephalus

We encourage you to explore the local groups and networks available in your area. Be informed and stay connected!

Facebook

Oregon

Portland (& Vancouver, WA)

Online

info@hydroassoc.org

 

WEBINARS AND EDUCATION

We are pleased to offer educational webinars to help you stay informed and current on the latest news surrounding hydrocephalus. These interactive, free webinars are designed to educate our community on a variety of topics which include normal pressure hydrocephalus (NPH), research, shunt technology, and more.Our webinar series features presentations from medical professionals, researchers, and others with a direct connection to hydrocephalus. Each webinar is moderated by HA’s Support and Education Staff and are archived and accessible following the event in our webinar recordings. Our Support and Education Webinar Series is made possible through the generosity of our industry partner  Medtronic


Future Webinars

Please stay tuned for our 2022 Support and Education Webinar Series and more information regarding our future webinars.


Past Webinars

Congressional Fireside Chat – June 15, 2021

College Transition for Students with Hydrocephalus – December 14, 2021

College Planning for Students Who Learn Differently – March 10, 2021

Descripcion General de la hidrocefalia – July 17, 2021

 

 

National Hydrocephalus Foundation

National Hydrocephalus Foundation

 

What is Hydrocephalus?

Signs-of Hydrocephalus and Shunt Malfunctions

The most common signs are the following: Congenital Signs normally found in infants and children EARLY Enlargement of the head Irritability Lethargic Feeds poorly/Decrease in appetite Recurrent vomiting Prefers to be alone LATER Distended scalp veins High-pitched cry Increased muscle tone Enlarged and bulging fontanel “Sunset Eyes” (downward gaze) Acquired Signs normally found in older …

Normal Pressure Hydrocephalus (NPH) is a disorder, which usually strikes middle age to older adults. In NPH, the ventricles are enlarged, but there is no increase of pressure within the ventricles. The problem is thought to be due to the CSF not being fully reabsorbed by the body (through the arachnoid villi). NPH can be …

Hydrocephalus is diagnosed by a neurological exam and imaging techniques such as an ultrasound, CT scan, MRI, Fetal MRI (also referred to as Fast MRI, and is used on a pregnant woman who is carrying a child diagnosed with hydrocephalus) – and on occasion, a pressure-monitoring system. A doctor will order the appropriate tests according to …

Hydrocephalus Defined

Hydrocephalus is commonly referred to as “water on the brain.” The so-called “water” is actually cerebrospinal fluid (CSF), a clear liquid that looks like water and is produced in the 4 ventricles (cavities) of the brain, connected by narrow pathways.  CSF is in constant production and absorption;  it has a defined pathway from the lateral …

Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood. Here are a few facts about Hydrocephalus: Hydrocephalus is one of the most common birth …

Treatment of Hydrocephalus

Shunts What is a Shunt? A shunt is a mechanical device designed to transport the excess CSF from or near the point of obstruction to a re-absorption site and it is implanted under the skin. There are many different types of shunts, but there is no perfect shunt. The quest continues for one, the shunt …

 

Youth Webinar Series

Hydrocephalus Canada and Holland Bloorview Kids Rehabilitation Hospital are excited to share some helpful information and resources with you! Our Youth Webinar Series  focuses on topics that young people with hydrocephalus and/or spina bifida often have questions about.

Webinar #1 


Melissa Thorne

Presentation by Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“If You’ve Got Questions, We’ve Got Answers”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa Thorne will share her insights as the Youth Facilitator at Holland Bloorview in the Spina Bifida and Spinal Cord Injury Clinic and Youth Engagement department, as well as a person with sbh. Having lived at Holland Bloorview as an inpatient for a year after having multiple orthopedic surgeries in grade 10, Melissa will share her story, her background and explain how she helps kids address challenges like ‘growing up ready’. We will also have a guest speaker! Melissa will follow her presentation with a question and answer session.

 

Webinar #2

               
Steph Di Martino     Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Social Skills and Friendship”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. Steph and Melissa will explore strategies to build conversation skills, talk about where to meet people your age, how to build connections, what to look for in a friend and help you become aware of what you bring to the table of friendship. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #3

       
Kristen English    Melissa Thorne

Presentation by Kristen English, Therapeutic Recreation Specialist and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

 “Community Interaction and Recreation”

Watch on YouTube

November 3 at 7:00 p.m. EDT

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 12-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Kristen English will share her insights as a Certified Therapeutic Recreation Specialist in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. Kristen provides adapted sport and recreation opportunities to children and youth with disabilities including wheelchair basketball, All Abilities Soccer and the Access Boom Sailing program. She is also a Master of Health Evaluation candidate at the University of Waterloo. You can expect Kristen and Melissa to address how to find meaning in recreation and leisure participation, explore sports and recreation in your community as well as look at equipment that can be adapted to your needs. Kristen and Melissa will follow their presentation with a question and answer session.

 

Webinar #4

               
Steph Di Martino      Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Life Skills and Independence – Transition to Adulthood”

Watch on YouTube

November 10 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach at Holland Bloorview. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. You can expect Steph and Melissa to talk about tips and tricks for navigating the adult world, how to grow up ready and get involved in your own health care, learning responsibilities in the home (cooking, laundry, making plans, cleaning) as well as time management and organization. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #5


Melissa Thorne

Steph Di Martino 

Kristen English

Presentation by all speakers from our Youth Webinar Series, including: Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator, Steph Di Martino, Life Skills Coach and Kristen English, Therapeutic Recreation Specialist

“Still Have Questions? We Have Answers!”

Watch on YouTube

November 17 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa, Steph and Kristen from Holland Bloorview will provide participants with a recap and overview of the key points of each webinar in our Youth Webinar Series. Participants will also be given the opportunity to participate in a breakout room with a clinician. Melissa, Steph and Kristen will follow their presentation with a general question and answer session.

Have questions you want to ask any of our presenters? Need more information?
Send your questions in advance of any or all webinars. Please submit your questions to awalters@hydrocephalus.ca or info@hydrocephalus.ca

 

HEALTH AND MENTAL HEALTH

Anxiety, Depression, and Hydrocephalus in Children and Adolescents

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of parents and siblings of individuals with hydrocephalus.

Watch Now >

 

Anxiety, Depression, and Hydrocephalus in Adults and NPH

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of caregivers of individuals with hydrocephalus.

Watch Now >

The Healthiest You: Finding Balance Through Nutrition and Lifestyle Techniques

(You Tube)

Join Bethany Holmes, CHHC, in discussing how to find balance through nutrition and lifestyle techniques. This session will focus on self-care and whole-body wellness for healing. Bethany will share her personal story of going through brain surgery and her recovery and healing process. You will learn the importance of eating real foods to fuel your brain and body, giving you the nutrients and energy you need to feel your best. In this session, you will also learn several lifestyle techniques that will help cultivate self-love and appreciation and how to better cope with anxiety and stress. We will also discuss balancing health with social life, work and everyday responsibilities.

Watch Now >

 

 

Warmline – IOA – Institute on Aging – The Friendship Line – 24/7 – Weekdays and Weekends @ Phone
Jul 2 all-day

THE FRIENDSHIP LINE

24 Hour Telephone Hotline/Warmline

800-971-0016

We support individuals who find connecting within the community challenging

The Institute on Aging’s 24-hour toll-free Friendship Line is the only accredited crisis line in the country for people aged 60 years and older, and adults living with disabilities. We also make on-going outreach calls to lonely older adults. While there are other organizations that respond to the needs of people who may be contemplating suicide, none provides the type of services that IOA’s Friendship Line offers to respond to the public health problem of suicide among the elderly. Knowing that older people do not contact traditional suicide prevention centers on a regular basis even if they are considering suicide, we created the only program nationwide that reaches out to lonely, depressed, isolated, frail and/or suicidal older adults. Our trained volunteers specialize in offering a caring ear and having a friendly conversation with depressed older adults.

The Friendship Line is both a crisis intervention hotline and a warmline for non-emergency emotional support calls. Founded in 1973 by Dr. Patrick Arbore, Director of IOA’s Center for Elderly Suicide Prevention, and accredited by the American Association of Suicidology, Friendship Line provides round-the-clock crisis support services including:

  • Providing emotional support
  • Elder abuse reporting
  • Well-being checks
  • Grief support through assistance and reassurance
  • Active suicide intervention
  • Information and referrals for isolated older adults, and adults living with disabilities

In addition to receiving incoming calls, Friendship Line also offers outreach to eligible callers. We connect with people on a regular basis, and help monitor their physical and mental health concerns. The call-out services act as an intervention to prevent suicide in the long term by improving the quality of life and connectedness of isolated callers. Any aging adult or person living with disabilities, who suffers from depression, loneliness, isolation, anxiousness, or may be thinking about death or suicide, can benefit from completely confidential phone calls with Friendship Line volunteers. Sometimes the road to happiness begins by simply saying hello to someone who cares.

Jul
3
Sun
01 – Helpline – CBL – Call Blackline – Voice and Text Support for the Black, Black LGBTQ+, Brown, Native and Muslim Community – (800) 604-5841 @ Call/Text
Jul 3 all-day

Call toll-free anytime 24/7

(800) 604-5841

BlackLine® provides a space for peer support, counseling, witnessing and affirming the lived experiences to folxs who are most impacted by systematic oppression with an LGBTQ+ Black Femme Lens.

Call BlackLine® prioritizes BIPOC
(Black, Indigenous and People of Color).

By us for us.

 

AM – All Month – Brain Injury Awareness Month – Hydrocephalus Awareness – Support Groups, Events, Resources
Jul 3 all-day

 

Brain Injury Awareness Month — Hydrocephalus Awareness

Support Groups, Events, Resources, Advocacy

 

Facts about Hydrocephalus


Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood.

Here are a few facts about Hydrocephalus:

  • Hydrocephalus is one of the most common birth defects, each year one out of every 500 births results in hydrocephalus
  • Another 6,000 children annually develop hydrocephalus during the first 2 years of life
  • Brain injury occurs every 15 seconds in this country – and in some cases leads to the development of hydrocephalus
  • There are approximately 75,000 discharges a year from hospitals in the U.S. with a diagnosis of hydrocephalus
  • More than 50% of hydrocephalus cases are congenital
  • 70-90% of children born with spina bifida also develop hydrocephalus
  • CSF shunting procedures account for approximately $100 million in health care spending in the United States alone – half of this amount is spent on shunt revisions
  • In the past 25+ years, death rates associated with hydrocephalus have decreased from 54% to 5%, and the occurrence of intellectual disability has decreased from 62% to 30%
  • Normal Pressure Hydrocephalus affects adults and can cause dementia, difficulty in walking and, urinary incontinence
  • No statistics are kept (by our government), for those who develop

 

HELP LINES, PEER SUPPORT, SUPPORT GROUPS

 

 

The Hydrocephalus Association wants you to know that You Are Not Alone – We Are Here For You!

The Hydrocephalus Association staff and teams of trained volunteers are ready to answer your questions and listen to your concerns,  either by phone or email. Simply click on one of the following links to get connected to a volunteer or staff member for support, information, and connection.

 

PEER SUPPORT

To get connected with an HA Peer, please use this link to connect to a request from, after you complete it  your HA Peer will reach out to you very soon!

FOR ONE-TO-ONE PEER SUPPORT, CLICK HERE

 

CALL THE HA HELPLINE

Call (888) 598-3789 or email info@hydroassoc.org for support, resources, and answers to your questions.

Monday through Friday from 9:00 AM to 5:00 PM Eastern.

EMAIL HA CYBER VOLUNTEERS

Do you have a question about hydrocephalus? Treatment? Ongoing care?  The impact of the condition on all aspects of life? Our cyber volunteers are ready to answer your questions and share their experience via email.

You can submit them via email by clicking here!

 

Virtual Meet-ups

When: Every Saturday
Adults with Hydrocephalus Meet-Up (DC, MD, VA, PA, DE, NJ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
Every Saturday
Contact: Sierra Smith and Sara Curran-Kellogg
Adults with Hydrocephalus Meet-Up (WA, OR, ID, CA, NV, UT, NM, AZ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
1st Friday of the month
Contact: Kelly Varga
Adults with Hydrocephalus Meet-Up (FL, GA, AL, SC, MS)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When:
4th Sunday of the month
Contact: Jessica Coffaro
Teens Hang-Out
Come meet other teens with the condition! We’ll hang out, maybe play an icebreaker game, talk, and hopefully make some new friends.

When:
1st Sunday of the month
Contact: Olivia Maccoux and Tomas Rodriguez
Young Adults in their 20s Meet-Up
Come hang out with us and meet other young adults in their 20s living with hydrocephalus. We will have fun intros, icebreakers, and conversation. Let’s get to know each other!

When:
Every Saturday
Contact: info@hydroassoc.org
Dallas NPH Meet-Up
Join us for an NPH Community Network get together! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the NPH journey do. We welcome all those living with NPH in the State of Texas and surrounding states!

When:
3rd Wednesday of the month
Contact: Gary Chaffee
Parents Supporting Parents of Adult Children with IDD
OPEN TO all parents of adults living with hydrocephalus and intellectual and developmental disabilities. Our community is diverse in the many ways and degrees that hydrocephalus impacts our loved ones. For those of us supporting children who are adults with intellectual disability (ID), physical disability, and/or learning challenges (LD), the road can be challenging and lonely. Questions of managing their care, self-advocacy, independent living, and finding success in the workforce all loom large. Join other parents on a similar journey for connection and great discussion.

When:
4th Wednesday of the month
Contact: Jackie Mullock
Flourishing in Mid-Life: Group for Women Age 40- 59!

 

Local Community Networks Of Support For Hydrocephalus

We encourage you to explore the local groups and networks available in your area. Be informed and stay connected!

Facebook

Oregon

Portland (& Vancouver, WA)

Online

info@hydroassoc.org

 

WEBINARS AND EDUCATION

We are pleased to offer educational webinars to help you stay informed and current on the latest news surrounding hydrocephalus. These interactive, free webinars are designed to educate our community on a variety of topics which include normal pressure hydrocephalus (NPH), research, shunt technology, and more.Our webinar series features presentations from medical professionals, researchers, and others with a direct connection to hydrocephalus. Each webinar is moderated by HA’s Support and Education Staff and are archived and accessible following the event in our webinar recordings. Our Support and Education Webinar Series is made possible through the generosity of our industry partner  Medtronic


Future Webinars

Please stay tuned for our 2022 Support and Education Webinar Series and more information regarding our future webinars.


Past Webinars

Congressional Fireside Chat – June 15, 2021

College Transition for Students with Hydrocephalus – December 14, 2021

College Planning for Students Who Learn Differently – March 10, 2021

Descripcion General de la hidrocefalia – July 17, 2021

 

 

National Hydrocephalus Foundation

National Hydrocephalus Foundation

 

What is Hydrocephalus?

Signs-of Hydrocephalus and Shunt Malfunctions

The most common signs are the following: Congenital Signs normally found in infants and children EARLY Enlargement of the head Irritability Lethargic Feeds poorly/Decrease in appetite Recurrent vomiting Prefers to be alone LATER Distended scalp veins High-pitched cry Increased muscle tone Enlarged and bulging fontanel “Sunset Eyes” (downward gaze) Acquired Signs normally found in older …

Normal Pressure Hydrocephalus (NPH) is a disorder, which usually strikes middle age to older adults. In NPH, the ventricles are enlarged, but there is no increase of pressure within the ventricles. The problem is thought to be due to the CSF not being fully reabsorbed by the body (through the arachnoid villi). NPH can be …

Hydrocephalus is diagnosed by a neurological exam and imaging techniques such as an ultrasound, CT scan, MRI, Fetal MRI (also referred to as Fast MRI, and is used on a pregnant woman who is carrying a child diagnosed with hydrocephalus) – and on occasion, a pressure-monitoring system. A doctor will order the appropriate tests according to …

Hydrocephalus Defined

Hydrocephalus is commonly referred to as “water on the brain.” The so-called “water” is actually cerebrospinal fluid (CSF), a clear liquid that looks like water and is produced in the 4 ventricles (cavities) of the brain, connected by narrow pathways.  CSF is in constant production and absorption;  it has a defined pathway from the lateral …

Although you may have not heard the word hydrocephalus (hi-dro-seff-a-lus), it is not an uncommon condition. Hydrocephalus has no ethnic or gender preferences – and it can develop at any time during gestation all the way through to senior adulthood. Here are a few facts about Hydrocephalus: Hydrocephalus is one of the most common birth …

Treatment of Hydrocephalus

Shunts What is a Shunt? A shunt is a mechanical device designed to transport the excess CSF from or near the point of obstruction to a re-absorption site and it is implanted under the skin. There are many different types of shunts, but there is no perfect shunt. The quest continues for one, the shunt …

 

Youth Webinar Series

Hydrocephalus Canada and Holland Bloorview Kids Rehabilitation Hospital are excited to share some helpful information and resources with you! Our Youth Webinar Series  focuses on topics that young people with hydrocephalus and/or spina bifida often have questions about.

Webinar #1 


Melissa Thorne

Presentation by Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“If You’ve Got Questions, We’ve Got Answers”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa Thorne will share her insights as the Youth Facilitator at Holland Bloorview in the Spina Bifida and Spinal Cord Injury Clinic and Youth Engagement department, as well as a person with sbh. Having lived at Holland Bloorview as an inpatient for a year after having multiple orthopedic surgeries in grade 10, Melissa will share her story, her background and explain how she helps kids address challenges like ‘growing up ready’. We will also have a guest speaker! Melissa will follow her presentation with a question and answer session.

 

Webinar #2

               
Steph Di Martino     Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Social Skills and Friendship”

Watch on YouTube

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. Steph and Melissa will explore strategies to build conversation skills, talk about where to meet people your age, how to build connections, what to look for in a friend and help you become aware of what you bring to the table of friendship. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #3

       
Kristen English    Melissa Thorne

Presentation by Kristen English, Therapeutic Recreation Specialist and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

 “Community Interaction and Recreation”

Watch on YouTube

November 3 at 7:00 p.m. EDT

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 12-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Kristen English will share her insights as a Certified Therapeutic Recreation Specialist in the Transitions, Recreation and Like Skills Team at Holland Bloorview Kids Rehab. Kristen provides adapted sport and recreation opportunities to children and youth with disabilities including wheelchair basketball, All Abilities Soccer and the Access Boom Sailing program. She is also a Master of Health Evaluation candidate at the University of Waterloo. You can expect Kristen and Melissa to address how to find meaning in recreation and leisure participation, explore sports and recreation in your community as well as look at equipment that can be adapted to your needs. Kristen and Melissa will follow their presentation with a question and answer session.

 

Webinar #4

               
Steph Di Martino      Melissa Thorne

Presentation by Steph Di Martino, Life Skills Coach and Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator

“Life Skills and Independence – Transition to Adulthood”

Watch on YouTube

November 10 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Steph Di Martino will share her insights as a Life Skills Coach at Holland Bloorview. As a Life Skills Coach, Steph helps to provide experience-based activities to support learning using discussion, role play, problem-solving and peer mentoring with an experiential/immersive approach. You can expect Steph and Melissa to talk about tips and tricks for navigating the adult world, how to grow up ready and get involved in your own health care, learning responsibilities in the home (cooking, laundry, making plans, cleaning) as well as time management and organization. Steph and Melissa will follow their presentation with a question and answer session.

 

Webinar #5


Melissa Thorne

Steph Di Martino 

Kristen English

Presentation by all speakers from our Youth Webinar Series, including: Melissa Thorne, Co-Moderator, HB Alumni Network & Youth Facilitator, Steph Di Martino, Life Skills Coach and Kristen English, Therapeutic Recreation Specialist

“Still Have Questions? We Have Answers!”

Watch on YouTube

November 17 at 7:00 p.m. ET

Who should attend
Youth from the hydrocephalus and spina bifida communities, ages 14-21. Parents are welcome to attend this webinar in support of their minor children.

What to expect
In this webinar, Melissa, Steph and Kristen from Holland Bloorview will provide participants with a recap and overview of the key points of each webinar in our Youth Webinar Series. Participants will also be given the opportunity to participate in a breakout room with a clinician. Melissa, Steph and Kristen will follow their presentation with a general question and answer session.

Have questions you want to ask any of our presenters? Need more information?
Send your questions in advance of any or all webinars. Please submit your questions to awalters@hydrocephalus.ca or info@hydrocephalus.ca

 

HEALTH AND MENTAL HEALTH

Anxiety, Depression, and Hydrocephalus in Children and Adolescents

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of parents and siblings of individuals with hydrocephalus.

Watch Now >

 

Anxiety, Depression, and Hydrocephalus in Adults and NPH

(You Tube)

This presentation will provide attendees with information and research regarding mood disorders that frequently occur in individuals with hydrocephalus. The discussion will include an emphasis upon incidence, prevention, and individual positive coping/adjustment. Discussions will also include family experiences of hydrocephalus and adjustment/coping experiences of caregivers of individuals with hydrocephalus.

Watch Now >

The Healthiest You: Finding Balance Through Nutrition and Lifestyle Techniques

(You Tube)

Join Bethany Holmes, CHHC, in discussing how to find balance through nutrition and lifestyle techniques. This session will focus on self-care and whole-body wellness for healing. Bethany will share her personal story of going through brain surgery and her recovery and healing process. You will learn the importance of eating real foods to fuel your brain and body, giving you the nutrients and energy you need to feel your best. In this session, you will also learn several lifestyle techniques that will help cultivate self-love and appreciation and how to better cope with anxiety and stress. We will also discuss balancing health with social life, work and everyday responsibilities.

Watch Now >

 

 

Warmline – IOA – Institute on Aging – The Friendship Line – 24/7 – Weekdays and Weekends @ Phone
Jul 3 all-day

THE FRIENDSHIP LINE

24 Hour Telephone Hotline/Warmline

800-971-0016

We support individuals who find connecting within the community challenging

The Institute on Aging’s 24-hour toll-free Friendship Line is the only accredited crisis line in the country for people aged 60 years and older, and adults living with disabilities. We also make on-going outreach calls to lonely older adults. While there are other organizations that respond to the needs of people who may be contemplating suicide, none provides the type of services that IOA’s Friendship Line offers to respond to the public health problem of suicide among the elderly. Knowing that older people do not contact traditional suicide prevention centers on a regular basis even if they are considering suicide, we created the only program nationwide that reaches out to lonely, depressed, isolated, frail and/or suicidal older adults. Our trained volunteers specialize in offering a caring ear and having a friendly conversation with depressed older adults.

The Friendship Line is both a crisis intervention hotline and a warmline for non-emergency emotional support calls. Founded in 1973 by Dr. Patrick Arbore, Director of IOA’s Center for Elderly Suicide Prevention, and accredited by the American Association of Suicidology, Friendship Line provides round-the-clock crisis support services including:

  • Providing emotional support
  • Elder abuse reporting
  • Well-being checks
  • Grief support through assistance and reassurance
  • Active suicide intervention
  • Information and referrals for isolated older adults, and adults living with disabilities

In addition to receiving incoming calls, Friendship Line also offers outreach to eligible callers. We connect with people on a regular basis, and help monitor their physical and mental health concerns. The call-out services act as an intervention to prevent suicide in the long term by improving the quality of life and connectedness of isolated callers. Any aging adult or person living with disabilities, who suffers from depression, loneliness, isolation, anxiousness, or may be thinking about death or suicide, can benefit from completely confidential phone calls with Friendship Line volunteers. Sometimes the road to happiness begins by simply saying hello to someone who cares.

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