Gabriel was diagnosed with Neurofibromatosis (Type 1) at the age of two. This disorder can cause tumors to grow along the nervous system (including in the brain, on cranial nerves and/or on the spinal cord), bone enlargements or deformities, scoliosis and learning disabilities. He has already been through more medical tests and exams in two years than most people can expect in their lifetime. So far we have been blessed with positive outcomes, however there is no way to foresee what the future holds for him. This is an unpredictable and progressive disorder. We were told that his genetic mutation of the 17th chromosome was extremely rare.
As we started researching and looking for answers, we have learned that this is actually one of the most common genetic disorders in the United States and the most common neurological disorder caused by a single gene. In fact, it is even more prevalent than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay Sachs combined! With it being so common, how had we not heard of this before? Why didn’t we know the symptoms and where to get help? Why are we searching so long and hard for answers?
It turns out not much is still known about Neurofibromatosis (NF) compared to other disorders. The Children’s Tumor Foundation, a non-profit 501(c)(3) medical foundation, began NF research 18 years ago and has already made great progress. However, there is still a long way to go. The money raised through Racing4Research will fund their Drug Discovery Initiative program to increase the number of candidate NF drugs being tested, and therefore to increase the chances that we will find therapies to treat the tumors, bone abnormalities, learning disabilities and other manifestations of NF.
We are asking for help in raising money for the Children’s Tumor Foundation. Research could benefit not only the more than 100,000 Americans diagnosed with Neurofibromatosis, but also another 100 million Americans—65 million with cancer and 35 million with learning disabilities. Think of how many people worldwide this could help! Thank you for all of your help! |