Good Housekeeping magazine profiles 5 women across the country who are passionate about a cause that has touched their lives and highlights what they are doing to make a difference. The Hydrocephalus Association (HA) was so excited and proud when one of our HA WALK chairs and a committed mom was selected to be profiled in “Committed to a Cause: 5 Women Who Are Making a Difference.” Cortney Pellettieri, mom to Max who is 6 years old and developed hydrocephalus when he was born, lives in the Los Angeles, California, area with her family. She is currently co-chairing the inaugural Los Angeles Hydrocephalus Association WALK with Tania Heise, Amber Milliken, Dan Solchanyk, and Jennifer Pope. The article plays an important role in our continued efforts to educate the public about hydrocephalus and the impact it has on the estimated 1 million Americans living with this chronic neurological condition. In the pediatric population, it is estimated that one to two of every 1,000 babies are born with hydrocephalus, making it as common as Down’s syndrome and more common than spina bifida or brain tumors. Children can also acquire hydrocephalus as a result of an injury to the brain
or an infection, among other causes. It is the most common reason for brain surgery in children, as there is no cure for hydrocephalus and the only treatment options require surgical intervention. As many of our members know, the prevalent treatment is still the implantation of a shunt into the brain to drain fluid from the brain to another area of the body, usually the abdominal cavity. Shunts often fail, leaving an individual to undergo numerous brain surgeries throughout their lifetime with no predictability as to when they will need this life-saving procedure.
Last year the National Institutes of Health (NIH) funded $6.4 million in research looking into causes and treatments for hydrocephalus, despite the prevalence of hydrocephalus in the United States. At the Hydrocephalus Association, we do not think this is enough. On June 4, 2012, HA and the pediatric-focused Hydrocephalus Clinical Research Network (HCRN) signed a partnership in which HA provides a portion of HCRN’s funding in order to ensure the continuation of HCRN’s substantial research into treatments and outcomes in hydrocephalus that benefit HA’s membership. HCRN Chairman Dr. John Kestle, a long-standing member of our Medical Advisory Board, joined the board of directors of HA. HA’s funding commitment is substantial – more than $1 million through December 2014. These funds support research site coordinators at each of the 9 sites and the shared data coordinating center at the University of Utah, thereby allow patient populations to be pooled and studied more rapidly. We encourage our readers to learn more about the exciting research projects and success of the HCRN by visiting their website as well as some of our research updates listed below.
The Hydrocephalus Association, along with our Medical Advisory Board, the HCRN, and our nation-wide network of volunteer WALK chairs and Support Group leaders, will continue to raise awareness for hydrocephalus as well as to provide information and support resources to the pediatric and adult community.
To learn how you can get involved, visit our website or email firstname.lastname@example.org. Join our incredible network of volunteers across the country working to raise awareness about hydrocephalus and get us closer to finding better treatment options and, ultimately, a cure.