BENEFITING: Beyond Batten Disease Foundation
ORGANIZER: Beyond Batten Disease Foundation
EVENT: The Woodlands Marathon 2016
EVENT DATE: Mar 04, 2016
My Friend Will was diagnosed with Batten Disease when we were both 6 years old. Batten has taken my friend away from me. Will and I used to be able to play together doing the things that we were both interested in. In the past 6 years Batten's has completely changed Will. He can no longer do the same things that I can. It makes me sad that he can't play paintball or ride scooters or do any of the other things I like to do with my friends. The one thing we can still do together is run. So we are both running the 2K at the Woodlands Marathon.
We are very close to finding a cure that will bring my friend back. Any donation helps. Thank you very much for helping me out with my goal of beating this disease that has taken my friend from me.
HOPE-The Will Herndon Research Fund wrote -
The Will Herndon Research Fund was founded in 2009 to raise awarness and funds to treat and cure juvenile Batten Disease. Will Herndon was just 6 years old when he was diagnosed with a fatal, genetic diesase. Imagine blindness, Alzheimer's, and Parkinson's diesases all rolled into one. His family was told nothing could be done to SAVE WILL. Relying soley on their faith and the support of thousands in The Woodlands' community, they set out on a journey that has raised $3.2 million to date. These contributions have been used to fund groundbreaking research at The Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital. Scientists, funded by HOPE, have discovered six different drug compounds that could slow the progression of the disease. Two of these compounds are under further evaluation, with the hopes of being approved by the FDA for a clinical trial. Our mission is simple: find a treatment and a cure that gives Will a promising future! Thank you for believing in HOPE!