Mission. To advocate for and fund research directed towards a cure and treatment options for patients with Sanfilippo Syndrome.
Sanfilippo Syndrome is a terminal and rapidly degenerative genetic disease in children. It is like a 'Childhood Alzheimer's'. As a parent, you just begin to start knowing your child's personality around age 3 or 4, and then it is all taken away right before your eyes. Today, there is no proven cure or treatment. Cure Sanfilippo Foundation is out to change that...and fast. With your help we can give Sanfilippo families HOPE and children a chance at LIFE.
My name is Will "WILLPower" Byers and I'm Captain of the WILLPower team! I am fighting for my life and racing against time to STOP Sanfilippo Syndrome!
Read my story below:
We are Fueled by WILL Power and are running The Woodlands Marathon to raise funding and awareness for Sanfilippo Syndrome research!
Our team is running in honor of Will Byers, a brave 7 year old boy from Spring, TX who loves to run and who was diagnosed with Sanfilippo Syndrome, Type B in April 2015. Sanfilippo Syndrome is a rare, terminal genetic disorder in which the body lacks a specific enzyme to break down cellular waste, leading to a terminal buildup in cellular tissue and organs leading to premature death. 1 in 70,000 children are afflicted with this terrible disorder.
Will was diagnosed with Sanfilippo Syndrome, Type B (MPS III-B) in March 2015. To find out that your beautiful son has a rare, incurable, degenerative disease is unimaginable. In an instant, every dream we had for our child, from playing little league to college graduation, became uncertain. Sanfilippo Syndrome is a progressive disorder that starts to shut down the brain and central nervous system. Enzymes needed for cells to process cellular waste are missing or are poorly functioning. Over time, waste build up leads to severe disability, robbing a child of the ability to walk, talk, and do everyday activities independently, eventually leading to early death. The heart breaking truth is that without funding there is no treatment. Without treatment, most Sanfilippo children do not reach adulthood. But, even now, we find HOPE. Please help us raise awareness and find a cure!
CHANGE WILL'S OUTCOME
We were devastated upon hearing Will’s initial diagnosis, but we continue to find HOPE. We are living in a time of medical miracles and history is in the making. Knowing that the first ever Sanfilippo Type B gene therapy human clinical trials are underway as of December 2017 means that a cure could be on the horizon. But we still need YOUR HELP. These amazing studies and trials are happening in part because other Sanfilippo families have made their voices heard and raised awareness and funding to make treatments no longer a far-off dream, but a potential reality. And now we join their voices, and we ask you to join with us. Become fueled with WILL Power and donate today!
All donations go directly to Cure Sanfilippo Foundation (Tax ID: 46-4322131), a non-profit 501c3 organization and will be used to fund research and upcoming clinical trials for the treatment of Sanfilippo Syndrome. All donations are tax deductible. For more information on the Cure Sanfilippo Foundation, please visit www.CureSFF.org.