This July, the Hydrocephalus Association is co-hosting a ground-breaking research conference designed to bring together pre-eminent researchers and scientists to advance research around hydrocephalus. Read more
By Randi Corey, National Director of Special Events and Volunteer Support
At the 2012 Veteran WALK Chair’s meeting Hydrocephalus Association introduced its new School WALK program. The program was the brainchild of Long Island WALK Co-Chair, Mia Padron. The event Mia coordinated last fall raised over $4,000 with 114 kids participating in their own “mini-WALK” after school. Most importantly, all of the school’s 4th graders learned all about hydrocephalus through educational sessions. A shunt manufacturer’s representative accompanied Mia for the education portions of the program, bringing visual aids to share with the class – a shunt model, brain anatomy models, etc. Then Mia’s son, Tyler, answered his classmates’ questions about his condition and treatment. Read more
Congratulations to Kim Ruiz of Tracy, CA for being honored with the Red Cross Hero of the Year Award. As the mother of a child with hydrocephalus Kim has dedicated herself to helping our community achieve heightened awareness. As the Red Cross Hero of the Year, Ms. Ruiz is in an unique position to do just that.
Dr. David Limbrick, an investigator for the Hydrocephalus Children’s Research Network (HCRN) has received an K23 Career Development Award by the National Institute of Neurological Disorders and Stroke (NINDS).
By John Kestle, MD, MSc, FRCSC, FACS
(re-posted with the author’s permission)
The HCRN has successfully launched a new, potentially ground-breaking study across the Network. This study, titled Ventricular Involvement in Neuropsychological Outcomes in Pediatric Hydrocephalus, or VINOH for short, is funded by a Mentored Young Investigator award from the Hydrocephalus Association received by Dr. Jay Riva-Cambrin at Primary Children’s Medical Center in Salt Lake City, Utah. This study is looking into the short term implications hydrocephalus may have for school-aged patients concerning school performance, cognitive functioning, and social well-being. In addition, this study will be addressing the very important question of if and to what extent ventricle size impacts both, neuropsychological and clinical outcomes. Another exciting aspect of the VINOH study is the collaboration it has initiated across all HCRN Read more
Watch the highlights from our last conference on hydrocephalus, which took place in Cleveland, OH in 2010. We invite you to register for the upcoming 12th National Conference, which will be held in Bethesda, MD from this June 26th through July 1st.
Huffington Post columnist Marie Marley shines a further light on Normal Pressure Hydrocephalus (NPH) and tells the stories of Alicia Harper and Jimmy Nowell. Originally misdiagnosed, they were both finally able to receive a successful and accurate diagnosis and find relief from their symptoms by shunt placement.
By Dawn Mancuso, HA CEO
A very famous author from across the pond (hint: “…that which we call a rose by any other name would smell as sweet”) once asked “What’s in a name?”
As I travel to meetings on behalf of the Hydrocephalus Association (HA), and as I talk to more and more people affected by hydrocephalus, my conversations always circle back to one common theme: the need for more research on the condition. These conversations have made me stop to ponder just what do we mean by the word “research” and how should HA best serve this goal? Read more
Sheri Burdine, the founder or Hydroangelsovertexas, is dedicated to spreading the word about hydrocephalus. Due to her tireless efforts on behalf of the hydrocephalus community, she was awarded the Jefferson Award which is given to people who go above and beyond to help others. Her story was featured by a local NBC Affiliate.
Watch the video here: