BENEFITING: CURE SANFILIPPO FOUNDATION
Show the world that you are fueled by WILL Power and run with us at upcoming races around the country! Join our team as a fundraising teammate and challenge your friends, family, and colleagues to sponsor your race and support life-saving research at the same time!
All you have to do is join the team, set up a profile, and pick your race. Any race in any place can be run in honor of Will and all of the children fighting Sanfilippo Syndrome! We will send you an customizable WILLPower letter that you can then send out to your supporters in order to help raise awareness and funds to combat this devasting disease! Thank you for your support!
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 gene therapy human clinical trials are slated to start in 2016 means that a cure could be on the horizon. But we 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 upcoming research and clincial trials for the treatment of Sanfilippo Syndrome. All donations are tax deductible. More information on the Cure Sanfilippo Foundation can be found at www.CureSFF.org.
Donations can be made here with a credit card or a check* can be mailed to:
Cure Sanfilippo Foundation
PO Box 6901
Columbia, SC 29260
*If donating by check, please write 'WILL Power' in the memo line.
For more information on MPS III, please go to: http://mpssociety.org/mps/mps-iii/