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.
I'm Will "WILLPower" Byers and the Captain of Team WILLPower! I'm in a race against time to save myself and all my Sanfilippo friends!
Read on to learn more about me and Sanfilippo Syndrome:
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 6 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 gene therapy human clinical trials started in 2016 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.
|Donor||Donation Amount||Donation Date||Comment|
|Emily Ryan||$22.00||3/3/2017||Prayers and support for WillPower!|
|Abby Grace Ferguson||$25.00||3/3/2017||Good luck to my buddy Will!|
|Katherine Walton||$50.00||3/3/2017||Here we come second place!|
|Anonymous Donor||$100.00||3/3/2017||Will Power!|
|Kristen Hinman||$50.00||3/3/2017||Go, Byers family! From your WillPOWER fans in Washington!|
|The Woodlands Marathon||$2,000.00*||3/3/2017||Congratulations and thank you for participating in The Woodlands Marathon Charity Challenge.|
|Anonymous Donor||$21.00||3/2/2017||from Hannah Holland - for WILL Power!|
|Anonymous Donor||$207.00||3/2/2017||Good luck Will !|
|Alina Daszkowski||$100.00||3/2/2017||Run Will, run like the wind! Sending you lots of love from Switzerland!!|
|Dennis McDaniel||$150.00||3/1/2017||Run like the Wind Will|
|Laurie Van Cleve||$50.00||2/27/2017|
|Rachel Forman||$30.00||2/27/2017||Good Luck Will!|
|Sarah Fedeli||$20.00||2/27/2017||Good luck in your race little buddy! Love you!|
|Carolyn worrall||$55.00||2/27/2017||Go Will!|
|Jen, Mike, Eloise, and Mae The Soares-Krantz Family||$50.00||2/27/2017||Go, Will, Go! We are so proud of you!|
|Carrie Wall||$50.00||2/25/2017||Good luck!|
|Bethany Brehm||$50.00||2/24/2017||Go Will Go! Love from Andy, Bethany, Juliana and Macy|
|Katherine Walton||$105.00||2/24/2017||Go, Will, go!!! From your Ohio friends, the Waltons|
|Don Kehlenbeck||$110.00||2/23/2017||Go Will....Run like the Wind!|
|Anonymous Donor||$20.00||2/22/2017||Go Will and Chris!|
|Jerrod Core||$100.00||2/22/2017||Congrats to Will for all of his hard work on the runs, and to the Will Power Team for their tireless efforts! Good luck on race day!|
|Thomas & Alice Bihl||$100.00||2/22/2017||Go Will, Jax, and Chris!!!|
|Rosina Muoio||$20.00||2/22/2017||Go Will and the WILLPOWER Team! My thoughts and prayers are with you!|
|William Nelson||$50.00||2/21/2017||Go Will!|
|Sylvia Fletcher||$55.00||2/21/2017||Donation from Jimmy and Sylvia Fletcher|
|KADIRA SINGH||$50.00||2/21/2017||Go Will!|
|Randy Schultz||$110.00||2/21/2017||Go Will Go!!|
|Jenny wilber||$27.50||2/17/2017||Go Will!!!|
|Anonymous Donor||$20.00||2/17/2017||The Schildmeyer's cheer on Chris and Will. Go WillPower !!|
|Renee Saldivar||$25.00||2/2/2017||Go Will!|
|WALKING TOTS||$100.00||2/2/2017||Proud to #RUNwithWILL|
|John Castner||$60.00||1/30/2017||Run strong, Will! Our prayers and support are with you and your friends!|
|Team PRT||$500.00||1/23/2017||Good luck Will!|
|Keith Barnard||$100.00||1/19/2017||Go Will! Have fun!!|
|Anonymous Donor||$100.00||1/18/2017||Go Will!|
|Anonymous Donor||$100.00||1/18/2017||Go Will!!|
|John Cromb||$100.00||1/18/2017||Have fun and good luck in the race!|
|Lacey Thomas||$25.00||1/14/2017||#willpower #marietta|
|Meredith Atwood||$55.00||1/14/2017||Go Will!|
|R & Z Foley||$160.00||1/14/2017|
|Paula Ruble||$65.00||1/13/2017||We are on your team Will and very proud of you!|
|Paul and Paula Byers||$102.00||1/12/2017||Go Will Go! Mimi and PopPop are so proud of you!|
|Gwen English||$50.00||1/12/2017||Proud of Team Will Power!!|
|Randall Mueller||$65.00||1/11/2017||Go champ!|
|Anonymous Donor||$110.00||1/11/2017||Go Will go!|
|* offline donation|