Imagine a world where we could prevent or reverse hydrocephalus with a pill — no surgery, no shunts, and virtually no side effects. Emerging research into this condition, while early, holds the promise to profoundly change the way hydrocephalus is treated in the future.
Today, fueled by the passion of people like you affected by hydrocephalus and committed to finding a cure — the Hydrocephalus Association has become the largest patient advocate, educator and private funder of hydrocephalus research.
I’d like to express my gratitude for your support of the Hydrocephalus Association, a community that stands United for a Cure.
I’d like to share with you the story of how hydrocephalus profoundly impacted our family, and hope that you will stand with us to provide more support to families in need, fund more research and generate more awareness about hydrocephalus.
Like many people, I first learned of hydrocephalus when I was personally affected. In 2010 our son, Akhil, was born 11 weeks premature as a result of a viral infection during the pregnancy. He was resuscitated the day after his birth, which led to brain bleeds and other complications. I know many of you understand the fear and pain we faced.
The amazing doctors and caregivers at the NICU worked with Akhil on multiple complications associated with prematurity. At 40 weeks, he received his first brain MRI that confirmed he had hydrocephalus.
We also received the devastating news that Akhil’s brain had been severely affected by the viral infection. At three months old, Akhil passed away at home surrounded by his brothers, close family, and lots of love.
I know this is the kind of story we don’t often share in our community. Akhil inspired our family to seek a cure for hydrocephalus. I share his story with you to convey the urgency I feel to stand United for a Cure today.
During those days of hope and despair, I reached out to the Hydrocephalus Association for information about the condition. Determined to better understand the condition after Akhil’s passing, I attended the 2010 National Conference on Hydrocephalus in Cleveland, Ohio, hosted by the association.
So many in the hydrocephalus community welcomed us with warmth and understanding, and I came away from the conference inspired and resolved to honor Akhil’s memory by supporting the Hydrocephalus Association.
Five years later, I am grateful for the opportunity to serve on the board as the Chair of an organization with a progressive agenda to provide support, raise awareness, fund research and dare to dream of a world without hydrocephalus.
The Hydrocephalus Association stands with you, committed to creating a community of people that seek clarity in understanding the condition and actively pursue a cure on behalf of those impacted.
I am confident that through the Hydrocephalus Association’s continued persistence, the power of our collective voice, and generous annual gifts from people like you, we will pave the way to medical breakthroughs that will dramatically improve lives.
Please join us today, by submitting your annual membership donation to the Hydrocephalus Association. Together we will conquer this devastating condition, one member, one voice at a time.
Knowing we can count on you for 2015, we will continue to move forward. Together, we are a strong and resilient community. The Hydrocephalus Association has made amazing strides in advocacy, awareness and research efforts: from securing language in federal legislation to make hydrocephalus research eligible to receive funding through the Congressionally Directed Medical Research Program administered by the Department of Defense, to recently launching a virtual lab and global network of scientists pursuing cure-based research and providing seed grants to help accelerate new discoveries.
If you live with hydrocephalus, love someone with hydrocephalus, or worry about your risk for hydrocephalus, please support the Hydrocephalus Association with an annual membership contribution for 2015.
Akhil touched our lives briefly, but his strength and resilience in the face of adversity touched our lives deeply. He inspired us to believe that a journey of 1000 steps must begin with the first step.
Your gift will provide support and education and help transform bold research ideas into innovative treatments, giving us more ways to beat hydrocephalus and save lives. Please send your support today.
United I Stand,
P.S. Please save-the-date for the 2016 National Conference on Hydrocephalus. This important conference will be held on June 16-19, 2016, in Minneapolis, Minnesota. Stay tuned for more details coming your way soon. In the meantime, please mark your calendars to stand United for a Cure!