The Hydrocephalus Association Mission:
To eliminate the challenges of hydrocephalus.
Hydrocephalus (hi'dro-sef'a-lus) is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities of the brain called ventricles.
From The BlogLooking Back…Moving Forward: Facing the Future with Fierce Determination and Optimism
This is college application time for the high school seniors in our community who are applying to college. The pains of completing the paperwork and writing the essays can be felt throughout the entire family, as many parents will attest! For seniors writing their essays, it is also a time of self-reflection. They dig down deep to find the perfect words and sentiments that will truly reflect who they are, transforming lines on a page to a living, breathing human being. Elijah Lawrence is a member of our Teens Take Charge (TTC) Advisory Council, has been a summer intern in our HA office, and his family has had a close connection to HA for many many years. As we continue our 30th anniversary commemoration, Elijah gave us permission to share his college essay. As he reflects back on his life, he also reflects back on the values his parents have instilled in him, as well as the values, information and self-advocacy tools that TTC and HA strive deliver to our community and, particularly, our young adults. Pull out the hankie…or at least be ready to clap loudly. (more…)
Portland: Here We Come! 2014 Hydrocephalus Conference
SAVE THE DATE: The 13th National Conference on Hydrocephalus will take place in Portland, OR, on July 9-11, 2014!
The goal of our conferences is to provide tools and connections to address the medical, educational and social complexities of living with hydrocephalus and to provide the opportunity for an enjoyable get together!
There will also be plenty of interactive sessions, the cornerstone educational seminars by our team of medical professionals and researchers with time for Q&A, the ever popular hands-on brain anatomy and physiology lab, and the dinner and dance with talent show. (more…)
Medical Advisory Board Member on Research Team to Investigate Long-Term Outcomes of TBI
On November 14, 2013, Seattle Seahawks owner and Microsoft co-founder Paul Allen announced that he will fund a two-year, $2.4 million study looking into the long-term implications of damage to the brain caused by a traumatic brain injury (TBI), such as a blow(s) to the head. The Seattle-based project will bring together scientists from the University of Washington (UW) and the Allen Institute for Brain Science. A principal investigator on the UW team is Dr. Richard Ellenbogen, a University of Washington neurosurgeon and a member of the Hydrocephalus Association Medical Advisory Board. Dr. Ellenbogen volunteers as a neurological specialist to the NFL. (more…)
Looking Back…Moving Forward: Mentoring the Future Voice of Hydrocephalus
Many members of our community have come to know Jennifer Bechard Johnson, the Hydrocephalus Association’s (HA) Education and Support Manager and our Teens Take Charge (TTC) mentor. She has spent countless hours on the phone offering support, information, caring, and a first-hand perspective on growing up and living with hydrocephalus. She has endured 100 brain surgeries to revise her shunt since her diagnosis at 10 and first shunt placement at 11. Her complicated case of hydrocephalus has not deterred her from being a source of inspiration for the teens and young adults in our community, as she helps them become self-advocates for their condition with medical professionals, educational professionals, government representatives, and the general public. Jenn recently (more…)
- Looking Back…Moving Forward: Facing the Future with Fierce Determination and Optimism
- Portland: Here We Come! 2014 Hydrocephalus Conference
- Medical Advisory Board Member on Research Team to Investigate Long-Term Outcomes of TBI
- Looking Back…Moving Forward: Mentoring the Future Voice of Hydrocephalus
- HA Joins #GivingTuesday THIS December 3, 2013
Hydrocephalus in the News
- Michigan Teen Shows Strong Will to Recover after Shunt Revision
- Romania will Provide Shunts for Hydrocephalus Treatment
- Seattle Seahawks Owner Donates $2.4 Million to Study Traumatic Brain Injury
- Active Lifestyle Magazine features Educational Video on NPH
- Accessible Playground Constructed in Memory of Beloved Daughter with Hydrocephalus