Will Byers

Will
Byers

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TotalRaised

$24,508

MyGoal

$25,000


Goal Progress
98%
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MyReason

Cure Sanfilippo Foundation

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. 

The Woodlands Marathon, Half, 5K and 2K
 The Woodlands, TX
February 24 - March 3, 2018

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'S STORY

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.

Contact information: 
Email: willpowermps@gmail.com
Facebook: www.facebook.com/willpowermps
Twitter: @willpowermps

Donations2Date: $24,508

Donor Donation Amount Donation Date Comment
Randall Easterling $20.00 9/18/2018
Kimberley Pool $50.00 4/25/2018
PRT Offshore $500.00 3/15/2018
The Woodlands Marathon $4,000.00* 3/14/2018 Congratulations and thank you for participating in The Woodlands Marathon Charity Challenge.
Timothy West $50.00 3/6/2018
William Wiggins $50.00 3/6/2018
Carly Adams $50.00 3/4/2018 You and your family continue to be an inspiration to me and so many others. Never give up!
Gary L DeWitt $200.00 3/4/2018
Anonymous Donor $10.00 3/2/2018
Lori Stoelk $110.00 3/2/2018
jim and peggy castner $100.00 3/2/2018 GO WILL!!!
Sarah Reintgen $50.00 3/2/2018
Barbara Moragues $100.00 3/2/2018
RZ Foley $52.50 3/2/2018
Jennifer Killion $100.00 3/2/2018
Melissa Christaldi $100.00 3/2/2018 We pray for your special day in the Race and know your hard work will pay off. Good luck Will!
Dennis Barry $215.00 3/2/2018 I hope you reach your goal little buddy... we’re praying and cheering for you in Mississippi Dennis Barry
A Rand $150.00 3/2/2018
Eve Kneller $102.00 3/2/2018 You are an amazing kiddo, Will! I love you buddy!
Robert Chase $25.00 3/2/2018 From Bob and Carol Chase Keep a strong Will!
Breezie Ogilbee $100.00 3/2/2018
Jona Hilario $26.25 3/2/2018
Anna Bock Mullins $52.50 3/2/2018 Go, Will! Go! #WILLpower #curesanfilippo #curesff #careaboutrare #mybuddywill
Anonymous Donor $160.00 3/2/2018
Desi Smith $100.00 3/2/2018
Dawn Peyton $50.00 3/2/2018 Go Will!
Jill Matte $25.00 3/2/2018
Anonymous Donor $110.00 3/2/2018
Jason Fruge $25.00 3/2/2018
Patsy Longo $100.00 3/2/2018
Stephanie Taylor $150.00 3/2/2018
Anonymous Donor $10.00 3/1/2018 Go Will!
Sarah Kunz $50.00 3/1/2018
Jane Polanek $100.00 3/1/2018
Theresa Wern $55.00 3/1/2018
Allison Koch $20.00 3/1/2018
Sarah Work $105.00 3/1/2018
Kate Sloan $160.00 3/1/2018 Way to go Will!
Michael Drieu $55.00 3/1/2018
Anonymous Donor $110.00 3/1/2018
Anonymous Donor $25.00 2/28/2018
Anonymous Donor $50.00 2/28/2018
Scott Laird $100.00 2/28/2018
Steve Woelfel $100.00 2/28/2018 WillPower!!!!!
Steve Arceneaux $120.00 2/28/2018
Marlon Cipriano $100.00 2/28/2018 You've got this Will!!!
Tucker Golson $20.00 2/28/2018
Sofia Lamon $100.00 2/28/2018
Nina Spencer $100.00 2/28/2018 Go WillPower!
Deborah Malbrough $110.00 2/28/2018
Randall Mueller $100.00 2/28/2018
Robin Ward $44.00 2/27/2018
Penelope Vick $20.00 2/27/2018
Catherine Garee $20.00 2/27/2018
Paula Byers $29.00 2/27/2018 Every day is a great day to support our little Buddy. Love you Will- Mimi and PopPop
Ladonna Dmitsak $100.00 2/27/2018 You’ve got this, Will!!! Go get’em!!!
Cup of Roe $20.00 2/27/2018
Adria Keeney (Global Shop Solutions) $1,000.00 2/27/2018 Donation from Global Shop Solutions
Reba Stevens $50.00 2/27/2018 Go WILLPOWER!!
Jennifer Proctor $55.00 2/27/2018
Rachel forman $22.00 2/27/2018
Elizabeth Grounds $50.00 2/27/2018
Anonymous Donor $22.00 2/27/2018
Kyle Muth $155.00 2/27/2018
Fred SCHILLING $27.50 2/27/2018
Anonymous Donor $26.25 2/27/2018
Christi Soileau $100.00 2/27/2018 Keep it up Will! We are all fighting for you. Christi, Steve, Austin, and Meagan Soileau #WILLpower
Amanda Wilzoch $30.00 2/27/2018
Liz Rookstool $20.00 2/27/2018 go Will!
Sheyalea Morris $20.00 2/27/2018
Dana Baumgartl $20.00 2/27/2018 Keep being awesome little man! ???? #willpower
Sarah Torre $20.00 2/27/2018
Jennifer McCabe $27.50 2/27/2018
Annie Behr $20.00 2/27/2018 You are all in our thoughts and prayers constantly.
Anonymous Donor $110.00 2/27/2018
Anonymous Donor $100.00 2/27/2018
Abby Fernandez $100.00 2/27/2018
Ron Dechiro $55.00 2/26/2018
Lucy Williford $100.00* 2/26/2018 Will Byers : Fueled by WILL Power: The Woodlands Marathon 2018
Diane Bihl $100.00 2/24/2018 Great Run, Will!! You make us proud everyday! Love you, Uncle Chris, Aunt Diane and Jax
Hee Young Paek $215.00 2/24/2018 Congrats on finishing your race Will!! - Rosa Paek and family.
Lyndley Maddox $750.00 2/23/2018 We are so sorry that we are unable to be there this year. Good luck to everyone running for Team Will Power!!!! Love, The Maddox Family
Susan Herendeen $25.00 2/23/2018
Lisa Graves $50.00 2/23/2018 Go Will! I donate this in memory of my Sweet Adam. 2/2/1988 - 1/10/2004
Amy Wittensoldner $20.00 2/23/2018 I’m an old friend of Diane.
Christina Toth $26.25 2/22/2018 Good luck Will!
Paul Byers $100.00 2/22/2018 Run like the wind Buddy! We love you very much. Mimi and PopPop
Lily Truong $50.00 2/20/2018
Susanne Dziedzic $100.00 2/20/2018
Penny Carman $25.00 2/19/2018
Paula Ruble $100.00 2/19/2018
Anonymous Donor $100.00* 2/19/2018
Hillary Haskins $50.00 2/18/2018
Howard Lloyd Stutz $100.00 2/16/2018 You can do it Will!!!
Danielle Cisler $118.00 2/14/2018
Anonymous Donor $2,500.00 2/6/2018
Randal Rebne $110.00 2/6/2018
Leigh Ann Carman $100.00 2/5/2018
Brenda Franco $25.00 2/4/2018 Will, your friend Natalia from church wishes you the best luck in your run!
Crystal Farson $50.00 2/2/2018
* offline donation