Brain Injury Awareness Month — Hydrocephalus Awareness
Support Groups, Events, Resources, Advocacy
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!
|
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
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
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 >
