Will Byers

Will
Byers

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TotalRaised

$14,233

MyGoal

$6,500


Goal Progress
219%
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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
March 3 - 4, 2017

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'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 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.

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

 

Donations2Date: $14,233

Donor Donation Amount Donation Date Comment
Lisa Rech $100.00 3/2/2020
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!
Anonymous Donor $250.00 3/3/2017 #WILLPower
Jamie Gauthier $300.00 3/3/2017
Anonymous Donor $500.00 3/3/2017 #WILLPower
Nathan Miller $100.00 3/3/2017
Katherine Walton $50.00 3/3/2017 Here we come second place!
Anonymous Donor $100.00 3/3/2017 Will Power!
Clare Samol $100.00 3/3/2017
Kristen Hinman $50.00 3/3/2017 Go, Byers family! From your WillPOWER fans in Washington!
Lisa Ducote $50.00 3/3/2017
Anonymous Donor $700.00 3/3/2017
Stephanie Taylor $515.00 3/3/2017
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!
Shaun Arnold $50.00 3/2/2017
Anonymous Donor $50.00 3/2/2017
Anonymous Donor $207.00 3/2/2017 Good luck Will !
Tori Blatt $100.00 3/2/2017
Ronnie Carman $100.00 3/2/2017
Alina Daszkowski $100.00 3/2/2017 Run Will, run like the wind! Sending you lots of love from Switzerland!!
Anonymous Donor $125.00 3/2/2017
Dennis McDaniel $150.00 3/1/2017 Run like the Wind Will
Julianne Benko $10.00 3/1/2017
Lisa Rech $100.00 2/28/2017
Heidi Khambatta $110.00 2/28/2017
Danielle Cisler $110.00 2/28/2017
Laurie Van Cleve $50.00 2/27/2017
Jamie Gauthier $300.00 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!
Caroline Ellingson $100.00 2/26/2017
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
Kristin English $25.00 2/24/2017
Katherine Walton $105.00 2/24/2017 Go, Will, go!!! From your Ohio friends, the Waltons
Samuel Mitschke $250.00 2/23/2017
Don Kehlenbeck $110.00 2/23/2017 Go Will....Run like the Wind!
Anonymous Donor $20.00 2/22/2017 Go Will and Chris!
Michael Drieu $100.00 2/22/2017
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!!!
Ron Dechiro $50.00 2/22/2017
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
Breeana Dixon $25.00 2/21/2017
Christina Quigley $27.50 2/21/2017
Barbara Breeding $25.00 2/21/2017
KADIRA SINGH $50.00 2/21/2017 Go Will!
Aaron Wade $100.00 2/21/2017
Reba Stevens $50.00 2/21/2017
Nina Spencer $100.00 2/21/2017
Randy Schultz $110.00 2/21/2017 Go Will Go!!
Anonymous Donor $100.00 2/21/2017
Anonymous Donor $50.00* 2/19/2017
Debbie Dixon $50.00 2/17/2017
kathryn brick $50.00 2/17/2017
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 !!
Catherine Garee $25.00 2/16/2017
Anonymous Donor $22.00 2/14/2017
Anonymous Donor $30.00 2/13/2017
William Wiggins $50.00 2/8/2017
Julia Belforti $20.00 2/2/2017
Jennifer McCabe $26.25 2/2/2017
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!
Daniel Hart $100.00 1/25/2017
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!
Jonathan Floyd $100.00 1/17/2017
Anonymous Donor $50.00 1/17/2017
Robin Fielder $50.00 1/16/2017
Michael Drieu $100.00 1/15/2017
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!
David Janise $100.00 1/12/2017
Paul and Paula Byers $102.00 1/12/2017 Go Will Go! Mimi and PopPop are so proud of you!
Michael Arispe $200.00 1/12/2017
Pete Bergeron $110.00 1/12/2017
Randal Rebne $100.00 1/12/2017
Gwen English $50.00 1/12/2017 Proud of Team Will Power!!
Nancy Hovland $52.50 1/11/2017
Anonymous Donor $200.00 1/11/2017
Hope Aures $100.00 1/11/2017
Randall Mueller $65.00 1/11/2017 Go champ!
Anonymous Donor $65.00 1/11/2017
Anonymous Donor $110.00 1/11/2017 Go Will go!
Anonymous Donor $100.00 1/11/2017
Zeke Peak $100.00 1/11/2017
* offline donation