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
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 >

 

 

MC – Master Chen – Tai Chi Resource – PreRecorded Tai Chi Videos – Weekdays and Weekends @ YouTube Link
Jun 26 all-day

 

Sponsor Cover Art

Free Tia Chi Training Videos

Provided by Master  JianFeng Chen

WEEKDAYS AND WEEKENDS

 

 Link to Master Chen pre-recorded YouTube videos: 

https://www.youtube.com/user/JianfengChen1978/videos?view=2&sort=dd&live_view=503&shelf_id=0

 

About Master JianFeng

Master JianFeng Chen is from the Fujian province of China. Inspired by his teachers and experiences, he wanted to bring traditional training of internal/external martial arts to the people of America. In China, martial arts is deeply imbedded in everyday life. Energy work, through Qigong and Tai Chi are often not stressed enough, so the full benefits of practice are not realized. His goal is to bring awareness of your breath, your energy, your movements and how it affects yourself and others so everyone can achieve balance and thus happiness and health in their lives.At the age of 8, JianFeng, joined the Junior Athletic School of Zhangzhou to begin his formal martial arts training. At the age of 11, he was selected to join the Fujian State Athletic Wushu Unit, that is internationally renowned for winning championships, especially in Tai Chi. His teachers were Grand Masters and World Champions in Tai Chi and Wushu.

WL -WarmLines – TP – The Treavor Project – TreavorSpace – Warmlines, Chat, Phone – Support Group – 24/7 @ Online VIA ZOOM
Jun 26 all-day

Treavor Porject Logo

Meet new LGBTQ friends in TrevorSpace

TrevorSpace is an affirming, online community for LGBTQ young people between the ages of 13-24 years old. With over 400,000 members across the globe, you can explore your identity, get advice, find support, and make friends in a moderated community intentionally designed for you.

To Join and enter TreavorSpace please use the link provided below.

https://www.trevorspace.org/register/

YE – YouthERA – Open Registration – Uplift Peer Support Training for Young People @ Register for Details
Jun 26 all-day

 

Uplift Peer Support Training for Young People

Uplift Trainings registration is live!

 

Uplift by Youth Era is a virtual summit for young people ages 14-21. The event is designed to motivate, empower, and support you to change your life and the lives of those around you. The event is packed with engaging lectures, challenging discussions, and impactful activities. You will take yourself to the next level and make a commitment to bettering yourself and those around you.

With funding from OHA, youth aged 14-21 years old, across Oregon will have the opportunity to attend Uplift, a virtual mental health summit created by Youth Era and the University of Oxford. Registration is free and youth across Oregon can sign up  here

C – TEC Youth Services – Clackamas Achievement Program – Assisting Youth with Education and Employment Goals – Accepting Referrals @ Online event regester for details
Jun 26 @ 7:00 pm – 9:00 pm

 

 

C-TEC Youth Services’ Clackamas Achievement Program supports youth ages 14-21 in and around Clackamas County who have not obtained a high school diploma or GED and have become disengaged from education during the COVID pandemic.

Services we offer include:

  • case management,
  • financial assistance,
  • support services,
  • system navigation,
  • and community referrals.

Initial contacts with youth focus on the safety, health, and well-being of the youth and family, with an emphasis on a caring interaction to support the student holistically.

Students will work with a  Youth Re engagement Advisor (YRA) who will stay in regular contact, providing appropriate referrals to community agencies, and helping to support the student with navigating school enrollment with their individual district, alternative, or GED program. The YRA will continue to support the youth by encouraging attendance, progress, and addressing any needs or barriers.

  • Support services such as tutors, transportation assistance, school supplies, equipment, etc. will be provided as appropriate.
  • Youth will be offered dual enrollment into other programs such as C-TEC’s Workforce Innovation and Opportunity Act (WIOA) services to leverage additional funds and services. WIOA participants are eligible for ongoing services that include transition to college, opportunities for career exploration and hands-on career exposure, work readiness training, certifications and credentials, and paid work experience.
  • Clackamas Community College is partnering to provide education services such as high school credit recovery and GED preparation and testing, however, this can be arranged with Mt Hood Community College or Portland Community College for students that are closer to these institutions.
  • Their Workforce Development Department will provide opportunities for youth over 18 that are interested in job training programs or increasing their skills. Assistance with financial aid will be offered, as well as one-on-one support with navigating processes and systems at CCC.
  • Clackamas Workforce Partnership is partnering to provide workforce development activities such as career exploration opportunities and paid work experience, as well as coordination between school districts and workforce development entities.

The YRA will continue to follow up with students and families to offer resources and support to help ensure continued school participation and progress. This program will provide trauma informed services.

 

Clackamas Achievement Program FAQ

Who is eligible for CAP?

  1. Must meet the following eligibility criteria:
    1. Youth ages 14-21 who are defined as a “dropout” and not exempt from attending public school;
    2. Youth ages 14-21 who are not enrolled in school*, and have not earned a high school diploma or GED;
  2. Must be at least 14 years old and under 22 years old;
  3. Must not have completed their high school credential prior to enrollment.

*Students who started GED classes after Sep 1st, 2021, are still eligible to enroll in CAP services.

How do I refer a youth to CAP?

Complete the following referral form: https://forms.gle/g2upqfKkc2gPi98e7

-or-

Contact Carlos with youth’s name, DOB, and contact information

Carlos Benson Martinez

Youth Re engagement Advisor
CBensonMartinez@clackesd.k12.or.us
503-395-8240 (call or text)

How much does CAP cost?

CAP is 100% free for youth.

What expenses are paid for by CAP?

If a youth or family is unable to afford expenses associated with GED classes and testing, school supplies, etc. CAP can cover those costs or leverage funds from other resources in the community.

Can a youth be dual enrolled in CAP & WIOA services?

Yes, funds can be “braided” to address a variety of the youth’s needs. While CAP solely addresses education goals, WIOA services include employment exploration opportunities that can continue on after a youth finishes CAP.

What are a youth’s education options with CAP?

Youth can attend GED classes and testing at Clackamas Community College, Credit Recovery at Clackamas Community College, Adult High School Diploma at Clackamas Community College, or reengagement into classes at a youth’s home school district to pursue a diploma.

Can youth outside of Clackamas County apply for CAP?

Youth are eligible to receive CAP services if they live outside Clackamas County, as long as they live within a reasonable distance to receive the service from Clackamas County.

What happens after a youth finishes CAP?

If youth would like support exploring employment opportunities, they can be enrolled into C-TEC’s WIOA program to continue receiving services. You can learn more about WIOA services by visiting C-TEC’s website, c-tecyouthservices.org

 

Jun
27
Mon
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 >

 

 

MC – Master Chen – Tai Chi Resource – PreRecorded Tai Chi Videos – Weekdays and Weekends @ YouTube Link
Jun 27 all-day

 

Sponsor Cover Art

Free Tia Chi Training Videos

Provided by Master  JianFeng Chen

WEEKDAYS AND WEEKENDS

 

 Link to Master Chen pre-recorded YouTube videos: 

https://www.youtube.com/user/JianfengChen1978/videos?view=2&sort=dd&live_view=503&shelf_id=0

 

About Master JianFeng

Master JianFeng Chen is from the Fujian province of China. Inspired by his teachers and experiences, he wanted to bring traditional training of internal/external martial arts to the people of America. In China, martial arts is deeply imbedded in everyday life. Energy work, through Qigong and Tai Chi are often not stressed enough, so the full benefits of practice are not realized. His goal is to bring awareness of your breath, your energy, your movements and how it affects yourself and others so everyone can achieve balance and thus happiness and health in their lives.At the age of 8, JianFeng, joined the Junior Athletic School of Zhangzhou to begin his formal martial arts training. At the age of 11, he was selected to join the Fujian State Athletic Wushu Unit, that is internationally renowned for winning championships, especially in Tai Chi. His teachers were Grand Masters and World Champions in Tai Chi and Wushu.

WL -WarmLines – TP – The Treavor Project – TreavorSpace – Warmlines, Chat, Phone – Support Group – 24/7 @ Online VIA ZOOM
Jun 27 all-day

Treavor Porject Logo

Meet new LGBTQ friends in TrevorSpace

TrevorSpace is an affirming, online community for LGBTQ young people between the ages of 13-24 years old. With over 400,000 members across the globe, you can explore your identity, get advice, find support, and make friends in a moderated community intentionally designed for you.

To Join and enter TreavorSpace please use the link provided below.

https://www.trevorspace.org/register/

YE – YouthERA – Open Registration – Uplift Peer Support Training for Young People @ Register for Details
Jun 27 all-day

 

Uplift Peer Support Training for Young People

Uplift Trainings registration is live!

 

Uplift by Youth Era is a virtual summit for young people ages 14-21. The event is designed to motivate, empower, and support you to change your life and the lives of those around you. The event is packed with engaging lectures, challenging discussions, and impactful activities. You will take yourself to the next level and make a commitment to bettering yourself and those around you.

With funding from OHA, youth aged 14-21 years old, across Oregon will have the opportunity to attend Uplift, a virtual mental health summit created by Youth Era and the University of Oxford. Registration is free and youth across Oregon can sign up  here

C – TEC Youth Services – Clackamas Achievement Program – Assisting Youth with Education and Employment Goals – Accepting Referrals @ Online event regester for details
Jun 27 @ 7:00 pm – 9:00 pm

 

 

C-TEC Youth Services’ Clackamas Achievement Program supports youth ages 14-21 in and around Clackamas County who have not obtained a high school diploma or GED and have become disengaged from education during the COVID pandemic.

Services we offer include:

  • case management,
  • financial assistance,
  • support services,
  • system navigation,
  • and community referrals.

Initial contacts with youth focus on the safety, health, and well-being of the youth and family, with an emphasis on a caring interaction to support the student holistically.

Students will work with a  Youth Re engagement Advisor (YRA) who will stay in regular contact, providing appropriate referrals to community agencies, and helping to support the student with navigating school enrollment with their individual district, alternative, or GED program. The YRA will continue to support the youth by encouraging attendance, progress, and addressing any needs or barriers.

  • Support services such as tutors, transportation assistance, school supplies, equipment, etc. will be provided as appropriate.
  • Youth will be offered dual enrollment into other programs such as C-TEC’s Workforce Innovation and Opportunity Act (WIOA) services to leverage additional funds and services. WIOA participants are eligible for ongoing services that include transition to college, opportunities for career exploration and hands-on career exposure, work readiness training, certifications and credentials, and paid work experience.
  • Clackamas Community College is partnering to provide education services such as high school credit recovery and GED preparation and testing, however, this can be arranged with Mt Hood Community College or Portland Community College for students that are closer to these institutions.
  • Their Workforce Development Department will provide opportunities for youth over 18 that are interested in job training programs or increasing their skills. Assistance with financial aid will be offered, as well as one-on-one support with navigating processes and systems at CCC.
  • Clackamas Workforce Partnership is partnering to provide workforce development activities such as career exploration opportunities and paid work experience, as well as coordination between school districts and workforce development entities.

The YRA will continue to follow up with students and families to offer resources and support to help ensure continued school participation and progress. This program will provide trauma informed services.

 

Clackamas Achievement Program FAQ

Who is eligible for CAP?

  1. Must meet the following eligibility criteria:
    1. Youth ages 14-21 who are defined as a “dropout” and not exempt from attending public school;
    2. Youth ages 14-21 who are not enrolled in school*, and have not earned a high school diploma or GED;
  2. Must be at least 14 years old and under 22 years old;
  3. Must not have completed their high school credential prior to enrollment.

*Students who started GED classes after Sep 1st, 2021, are still eligible to enroll in CAP services.

How do I refer a youth to CAP?

Complete the following referral form: https://forms.gle/g2upqfKkc2gPi98e7

-or-

Contact Carlos with youth’s name, DOB, and contact information

Carlos Benson Martinez

Youth Re engagement Advisor
CBensonMartinez@clackesd.k12.or.us
503-395-8240 (call or text)

How much does CAP cost?

CAP is 100% free for youth.

What expenses are paid for by CAP?

If a youth or family is unable to afford expenses associated with GED classes and testing, school supplies, etc. CAP can cover those costs or leverage funds from other resources in the community.

Can a youth be dual enrolled in CAP & WIOA services?

Yes, funds can be “braided” to address a variety of the youth’s needs. While CAP solely addresses education goals, WIOA services include employment exploration opportunities that can continue on after a youth finishes CAP.

What are a youth’s education options with CAP?

Youth can attend GED classes and testing at Clackamas Community College, Credit Recovery at Clackamas Community College, Adult High School Diploma at Clackamas Community College, or reengagement into classes at a youth’s home school district to pursue a diploma.

Can youth outside of Clackamas County apply for CAP?

Youth are eligible to receive CAP services if they live outside Clackamas County, as long as they live within a reasonable distance to receive the service from Clackamas County.

What happens after a youth finishes CAP?

If youth would like support exploring employment opportunities, they can be enrolled into C-TEC’s WIOA program to continue receiving services. You can learn more about WIOA services by visiting C-TEC’s website, c-tecyouthservices.org

 

Jun
28
Tue
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 >

 

 

MC – Master Chen – Tai Chi Resource – PreRecorded Tai Chi Videos – Weekdays and Weekends @ YouTube Link
Jun 28 all-day

 

Sponsor Cover Art

Free Tia Chi Training Videos

Provided by Master  JianFeng Chen

WEEKDAYS AND WEEKENDS

 

 Link to Master Chen pre-recorded YouTube videos: 

https://www.youtube.com/user/JianfengChen1978/videos?view=2&sort=dd&live_view=503&shelf_id=0

 

About Master JianFeng

Master JianFeng Chen is from the Fujian province of China. Inspired by his teachers and experiences, he wanted to bring traditional training of internal/external martial arts to the people of America. In China, martial arts is deeply imbedded in everyday life. Energy work, through Qigong and Tai Chi are often not stressed enough, so the full benefits of practice are not realized. His goal is to bring awareness of your breath, your energy, your movements and how it affects yourself and others so everyone can achieve balance and thus happiness and health in their lives.At the age of 8, JianFeng, joined the Junior Athletic School of Zhangzhou to begin his formal martial arts training. At the age of 11, he was selected to join the Fujian State Athletic Wushu Unit, that is internationally renowned for winning championships, especially in Tai Chi. His teachers were Grand Masters and World Champions in Tai Chi and Wushu.

WL -WarmLines – TP – The Treavor Project – TreavorSpace – Warmlines, Chat, Phone – Support Group – 24/7 @ Online VIA ZOOM
Jun 28 all-day

Treavor Porject Logo

Meet new LGBTQ friends in TrevorSpace

TrevorSpace is an affirming, online community for LGBTQ young people between the ages of 13-24 years old. With over 400,000 members across the globe, you can explore your identity, get advice, find support, and make friends in a moderated community intentionally designed for you.

To Join and enter TreavorSpace please use the link provided below.

https://www.trevorspace.org/register/

YE – YouthERA – Open Registration – Uplift Peer Support Training for Young People @ Register for Details
Jun 28 all-day

 

Uplift Peer Support Training for Young People

Uplift Trainings registration is live!

 

Uplift by Youth Era is a virtual summit for young people ages 14-21. The event is designed to motivate, empower, and support you to change your life and the lives of those around you. The event is packed with engaging lectures, challenging discussions, and impactful activities. You will take yourself to the next level and make a commitment to bettering yourself and those around you.

With funding from OHA, youth aged 14-21 years old, across Oregon will have the opportunity to attend Uplift, a virtual mental health summit created by Youth Era and the University of Oxford. Registration is free and youth across Oregon can sign up  here

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!

PA – Project ABLE – Trauma Healing & Recovery – Tuesdays @ Online via Zoom
Jun 28 @ 3:00 pm – 4:30 pm

 

Project A.B.L.E. (A Better Life Experience) offering virtual online peer support activities via Zoom.

logo

3:00pm-4:30pm PST | Trauma Healing & Recovery CEUs may be available]

Zoom Link for scheduled event times:

https://us04web.zoom.us/j/5433781708

Or call 720-707-2699 and enter Meeting ID# 543-378-1708

 

In addition, PROJECT ABLE now offers a *NEW* ABLE TALK LINE

Weekdays, Monday through Friday, from 9 a.m. – 5 p.m.

Call us to reach someone for support, learn about new resources or just to talk in a supportive recovery environment.

Call (503) 474-5509 and press”0″ to be connected with a peer support

 

Online Virtual Groups web page:

https://projectable.org/what-we-do/activities/

Online Virtual Activities Now Available – As a cautionary measure due to the Covid-19 Corona Virus, Project ABLE will be hosting our groups, activities and events online. Click on the link below to learn how to access our Virtual Activities!

 

Website:

https://projectable.org/

Facebook Social Media page:

https://www.facebook.com/ProjectABLEInc/

Project A.B.L.E. is “A place to find Hope, gain Support and build Community.”

C – TEC Youth Services – Clackamas Achievement Program – Assisting Youth with Education and Employment Goals – Accepting Referrals @ Online event regester for details
Jun 28 @ 7:00 pm – 9:00 pm

 

 

C-TEC Youth Services’ Clackamas Achievement Program supports youth ages 14-21 in and around Clackamas County who have not obtained a high school diploma or GED and have become disengaged from education during the COVID pandemic.

Services we offer include:

  • case management,
  • financial assistance,
  • support services,
  • system navigation,
  • and community referrals.

Initial contacts with youth focus on the safety, health, and well-being of the youth and family, with an emphasis on a caring interaction to support the student holistically.

Students will work with a  Youth Re engagement Advisor (YRA) who will stay in regular contact, providing appropriate referrals to community agencies, and helping to support the student with navigating school enrollment with their individual district, alternative, or GED program. The YRA will continue to support the youth by encouraging attendance, progress, and addressing any needs or barriers.

  • Support services such as tutors, transportation assistance, school supplies, equipment, etc. will be provided as appropriate.
  • Youth will be offered dual enrollment into other programs such as C-TEC’s Workforce Innovation and Opportunity Act (WIOA) services to leverage additional funds and services. WIOA participants are eligible for ongoing services that include transition to college, opportunities for career exploration and hands-on career exposure, work readiness training, certifications and credentials, and paid work experience.
  • Clackamas Community College is partnering to provide education services such as high school credit recovery and GED preparation and testing, however, this can be arranged with Mt Hood Community College or Portland Community College for students that are closer to these institutions.
  • Their Workforce Development Department will provide opportunities for youth over 18 that are interested in job training programs or increasing their skills. Assistance with financial aid will be offered, as well as one-on-one support with navigating processes and systems at CCC.
  • Clackamas Workforce Partnership is partnering to provide workforce development activities such as career exploration opportunities and paid work experience, as well as coordination between school districts and workforce development entities.

The YRA will continue to follow up with students and families to offer resources and support to help ensure continued school participation and progress. This program will provide trauma informed services.

 

Clackamas Achievement Program FAQ

Who is eligible for CAP?

  1. Must meet the following eligibility criteria:
    1. Youth ages 14-21 who are defined as a “dropout” and not exempt from attending public school;
    2. Youth ages 14-21 who are not enrolled in school*, and have not earned a high school diploma or GED;
  2. Must be at least 14 years old and under 22 years old;
  3. Must not have completed their high school credential prior to enrollment.

*Students who started GED classes after Sep 1st, 2021, are still eligible to enroll in CAP services.

How do I refer a youth to CAP?

Complete the following referral form: https://forms.gle/g2upqfKkc2gPi98e7

-or-

Contact Carlos with youth’s name, DOB, and contact information

Carlos Benson Martinez

Youth Re engagement Advisor
CBensonMartinez@clackesd.k12.or.us
503-395-8240 (call or text)

How much does CAP cost?

CAP is 100% free for youth.

What expenses are paid for by CAP?

If a youth or family is unable to afford expenses associated with GED classes and testing, school supplies, etc. CAP can cover those costs or leverage funds from other resources in the community.

Can a youth be dual enrolled in CAP & WIOA services?

Yes, funds can be “braided” to address a variety of the youth’s needs. While CAP solely addresses education goals, WIOA services include employment exploration opportunities that can continue on after a youth finishes CAP.

What are a youth’s education options with CAP?

Youth can attend GED classes and testing at Clackamas Community College, Credit Recovery at Clackamas Community College, Adult High School Diploma at Clackamas Community College, or reengagement into classes at a youth’s home school district to pursue a diploma.

Can youth outside of Clackamas County apply for CAP?

Youth are eligible to receive CAP services if they live outside Clackamas County, as long as they live within a reasonable distance to receive the service from Clackamas County.

What happens after a youth finishes CAP?

If youth would like support exploring employment opportunities, they can be enrolled into C-TEC’s WIOA program to continue receiving services. You can learn more about WIOA services by visiting C-TEC’s website, c-tecyouthservices.org

 

Jun
29
Wed
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 >

 

 

MC – Master Chen – Tai Chi Resource – PreRecorded Tai Chi Videos – Weekdays and Weekends @ YouTube Link
Jun 29 all-day

 

Sponsor Cover Art

Free Tia Chi Training Videos

Provided by Master  JianFeng Chen

WEEKDAYS AND WEEKENDS

 

 Link to Master Chen pre-recorded YouTube videos: 

https://www.youtube.com/user/JianfengChen1978/videos?view=2&sort=dd&live_view=503&shelf_id=0

 

About Master JianFeng

Master JianFeng Chen is from the Fujian province of China. Inspired by his teachers and experiences, he wanted to bring traditional training of internal/external martial arts to the people of America. In China, martial arts is deeply imbedded in everyday life. Energy work, through Qigong and Tai Chi are often not stressed enough, so the full benefits of practice are not realized. His goal is to bring awareness of your breath, your energy, your movements and how it affects yourself and others so everyone can achieve balance and thus happiness and health in their lives.At the age of 8, JianFeng, joined the Junior Athletic School of Zhangzhou to begin his formal martial arts training. At the age of 11, he was selected to join the Fujian State Athletic Wushu Unit, that is internationally renowned for winning championships, especially in Tai Chi. His teachers were Grand Masters and World Champions in Tai Chi and Wushu.

WL -WarmLines – TP – The Treavor Project – TreavorSpace – Warmlines, Chat, Phone – Support Group – 24/7 @ Online VIA ZOOM
Jun 29 all-day

Treavor Porject Logo

Meet new LGBTQ friends in TrevorSpace

TrevorSpace is an affirming, online community for LGBTQ young people between the ages of 13-24 years old. With over 400,000 members across the globe, you can explore your identity, get advice, find support, and make friends in a moderated community intentionally designed for you.

To Join and enter TreavorSpace please use the link provided below.

https://www.trevorspace.org/register/

YE – YouthERA – Open Registration – Uplift Peer Support Training for Young People @ Register for Details
Jun 29 all-day

 

Uplift Peer Support Training for Young People

Uplift Trainings registration is live!

 

Uplift by Youth Era is a virtual summit for young people ages 14-21. The event is designed to motivate, empower, and support you to change your life and the lives of those around you. The event is packed with engaging lectures, challenging discussions, and impactful activities. You will take yourself to the next level and make a commitment to bettering yourself and those around you.

With funding from OHA, youth aged 14-21 years old, across Oregon will have the opportunity to attend Uplift, a virtual mental health summit created by Youth Era and the University of Oxford. Registration is free and youth across Oregon can sign up  here

C – TEC Youth Services – Clackamas Achievement Program – Assisting Youth with Education and Employment Goals – Accepting Referrals @ Online event regester for details
Jun 29 @ 7:00 pm – 9:00 pm

 

 

C-TEC Youth Services’ Clackamas Achievement Program supports youth ages 14-21 in and around Clackamas County who have not obtained a high school diploma or GED and have become disengaged from education during the COVID pandemic.

Services we offer include:

  • case management,
  • financial assistance,
  • support services,
  • system navigation,
  • and community referrals.

Initial contacts with youth focus on the safety, health, and well-being of the youth and family, with an emphasis on a caring interaction to support the student holistically.

Students will work with a  Youth Re engagement Advisor (YRA) who will stay in regular contact, providing appropriate referrals to community agencies, and helping to support the student with navigating school enrollment with their individual district, alternative, or GED program. The YRA will continue to support the youth by encouraging attendance, progress, and addressing any needs or barriers.

  • Support services such as tutors, transportation assistance, school supplies, equipment, etc. will be provided as appropriate.
  • Youth will be offered dual enrollment into other programs such as C-TEC’s Workforce Innovation and Opportunity Act (WIOA) services to leverage additional funds and services. WIOA participants are eligible for ongoing services that include transition to college, opportunities for career exploration and hands-on career exposure, work readiness training, certifications and credentials, and paid work experience.
  • Clackamas Community College is partnering to provide education services such as high school credit recovery and GED preparation and testing, however, this can be arranged with Mt Hood Community College or Portland Community College for students that are closer to these institutions.
  • Their Workforce Development Department will provide opportunities for youth over 18 that are interested in job training programs or increasing their skills. Assistance with financial aid will be offered, as well as one-on-one support with navigating processes and systems at CCC.
  • Clackamas Workforce Partnership is partnering to provide workforce development activities such as career exploration opportunities and paid work experience, as well as coordination between school districts and workforce development entities.

The YRA will continue to follow up with students and families to offer resources and support to help ensure continued school participation and progress. This program will provide trauma informed services.

 

Clackamas Achievement Program FAQ

Who is eligible for CAP?

  1. Must meet the following eligibility criteria:
    1. Youth ages 14-21 who are defined as a “dropout” and not exempt from attending public school;
    2. Youth ages 14-21 who are not enrolled in school*, and have not earned a high school diploma or GED;
  2. Must be at least 14 years old and under 22 years old;
  3. Must not have completed their high school credential prior to enrollment.

*Students who started GED classes after Sep 1st, 2021, are still eligible to enroll in CAP services.

How do I refer a youth to CAP?

Complete the following referral form: https://forms.gle/g2upqfKkc2gPi98e7

-or-

Contact Carlos with youth’s name, DOB, and contact information

Carlos Benson Martinez

Youth Re engagement Advisor
CBensonMartinez@clackesd.k12.or.us
503-395-8240 (call or text)

How much does CAP cost?

CAP is 100% free for youth.

What expenses are paid for by CAP?

If a youth or family is unable to afford expenses associated with GED classes and testing, school supplies, etc. CAP can cover those costs or leverage funds from other resources in the community.

Can a youth be dual enrolled in CAP & WIOA services?

Yes, funds can be “braided” to address a variety of the youth’s needs. While CAP solely addresses education goals, WIOA services include employment exploration opportunities that can continue on after a youth finishes CAP.

What are a youth’s education options with CAP?

Youth can attend GED classes and testing at Clackamas Community College, Credit Recovery at Clackamas Community College, Adult High School Diploma at Clackamas Community College, or reengagement into classes at a youth’s home school district to pursue a diploma.

Can youth outside of Clackamas County apply for CAP?

Youth are eligible to receive CAP services if they live outside Clackamas County, as long as they live within a reasonable distance to receive the service from Clackamas County.

What happens after a youth finishes CAP?

If youth would like support exploring employment opportunities, they can be enrolled into C-TEC’s WIOA program to continue receiving services. You can learn more about WIOA services by visiting C-TEC’s website, c-tecyouthservices.org

 

Jun
30
Thu
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 >

 

 

MC – Master Chen – Tai Chi Resource – PreRecorded Tai Chi Videos – Weekdays and Weekends @ YouTube Link
Jun 30 all-day

 

Sponsor Cover Art

Free Tia Chi Training Videos

Provided by Master  JianFeng Chen

WEEKDAYS AND WEEKENDS

 

 Link to Master Chen pre-recorded YouTube videos: 

https://www.youtube.com/user/JianfengChen1978/videos?view=2&sort=dd&live_view=503&shelf_id=0

 

About Master JianFeng

Master JianFeng Chen is from the Fujian province of China. Inspired by his teachers and experiences, he wanted to bring traditional training of internal/external martial arts to the people of America. In China, martial arts is deeply imbedded in everyday life. Energy work, through Qigong and Tai Chi are often not stressed enough, so the full benefits of practice are not realized. His goal is to bring awareness of your breath, your energy, your movements and how it affects yourself and others so everyone can achieve balance and thus happiness and health in their lives.At the age of 8, JianFeng, joined the Junior Athletic School of Zhangzhou to begin his formal martial arts training. At the age of 11, he was selected to join the Fujian State Athletic Wushu Unit, that is internationally renowned for winning championships, especially in Tai Chi. His teachers were Grand Masters and World Champions in Tai Chi and Wushu.

WL -WarmLines – TP – The Treavor Project – TreavorSpace – Warmlines, Chat, Phone – Support Group – 24/7 @ Online VIA ZOOM
Jun 30 all-day

Treavor Porject Logo

Meet new LGBTQ friends in TrevorSpace

TrevorSpace is an affirming, online community for LGBTQ young people between the ages of 13-24 years old. With over 400,000 members across the globe, you can explore your identity, get advice, find support, and make friends in a moderated community intentionally designed for you.

To Join and enter TreavorSpace please use the link provided below.

https://www.trevorspace.org/register/

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