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 BlogMedical 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…)
HA Joins #GivingTuesday THIS December 3, 2013
What comes after Black Friday and Cyber Monday? #GivingTuesday! #GivingTuesday is a special call to action and creates a national day of giving around the annual shopping and spending season.
Seeing an opportunity to channel the generous spirit of the holiday season to inspire action around charitable giving, a group of friends and partners, led by the 92nd Street Y, came together to find ways to promote and celebrate the great American tradition of giving. The founding partners are thought leaders in philanthropy, social media and grassroots organizing, including the United Nations Foundation, DonorsChoose.org, Mashable, Blackbaud, (more…)
Hydrocephalus Getting the Attention It Deserves
As a father of a child with hydrocephalus, I’m committed to bringing much needed attention to our cause and finding new ways to treat this condition. Much like John Holter, the great toolmaker who developed the first commercially-viable shunt for his son, I’m willing to give all I have to see a medical breakthrough for William during my lifetime.
Since the mid-50s, we’ve seen amazing breakthroughs in nearly all areas of medicine: new vaccines and drugs … organ transplants … imaging technology … artificial joints … in vitro fertilization … the list goes on. Unfortunately, hydrocephalus has been mostly left behind. (more…)
A Million Reasons Strong
- 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 Getting the Attention It Deserves
- Looking Back…Moving Forward: A Trusted Source for Information
Hydrocephalus in the News
- Active Lifestyle Magazine features Educational Video on NPH
- Accessible Playground Constructed in Memory of Beloved Daughter with Hydrocephalus
- Local Performer Sings to Raise Awareness for Son’s Incurable Brain Condition
- New Rule Establishing Parity for Mental Health Disorders with Insurance Companies
- Alzheimer’s Weekly Features Normal Pressure Hydrocephalus