Will Byers

Will
Byers

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TotalRaised

$18,332

MyGoal

$25,000


Goal Progress
73%
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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 23 - March 2, 2019

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 8 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: $18,332

Donor Donation Amount Donation Date Comment
Myriam DeTrinidad $100.00 3/20/2019
Danny Golden $3,000.00 3/10/2019 Thanks for participating in the Beck and Masten Charity Challenge
John Cromb $255.93* 3/8/2019 Donation to Cure Sanfilippo Foundation in honor of Will Byers
Haude Elementary $24.63* 3/8/2019 "Haude Helps" spare change drive at Haude Elementary for WILL Power - final donations
Diann Bomkamp $52.50 3/7/2019
Haude Elementary $15.60* 3/6/2019 "Haude Helps" spare change drive at Haude Elementary for WILL Power - final donations
Haude Elementary $94.53* 3/5/2019 "Haude Helps" spare change drive at Haude Elementary for WILL Power - final donations
Anonymous Donor $50.00 3/3/2019
Lucy Williford $50.00 3/1/2019 Can’t attend your walk Will but want to support fundraising for awareness and research for Sanfilippo Syndrome for you and all children and their families affected by Sanfilippo Syndrome.
Amanda Johnson $25.00 3/1/2019
Judith Pack $100.00 3/1/2019
Haude Elementary $94.18* 3/1/2019 "Haude Helps" spare change drive at Haude Elementary for WILL Power - last day donations
Haude Elementary $81.55* 3/1/2019 "Haude Helps" spare change drive at Haude Elementary for WILL Power
Colleen Bowers $50.00 2/28/2019
Cassie OReilly $50.00 2/28/2019
Dominika Jurkovic $25.00 2/28/2019
Donna Brancifort $50.00 2/28/2019 Good Luck, Will!!!
Ashley Wagner $100.00 2/28/2019
Lisa Graves $50.00 2/27/2019 Go WillPower!
Jane Polanek $100.00 2/27/2019
Anonymous Donor $100.00 2/27/2019 We're on your team Will!
Mary Morrison $100.00 2/27/2019
Julie Yenzi $22.00 2/27/2019
Emogene D Powell $50.00 2/27/2019 Keep running Will.....
Crystal Hunter $48.40 2/27/2019 Continue to R U N. You’re making a difference!
Rachel Forman $50.00 2/26/2019 Go get em Will!
Megan Lister $50.00 2/26/2019
Robert Brown $200.00 2/26/2019 Go Will!!
Anonymous Donor $1,015.00 2/25/2019
Christi Soileau $100.00 2/23/2019 We are proud of you Will! Keep running and keep smiling! We love you!
Fernanda Havemann $52.50 2/23/2019
Anonymous Donor $50.00 2/23/2019 #Way to go Will. I am super proud of you.
Angela Stime $20.00 2/22/2019 Keep going!
RZ Foley $105.00 2/22/2019
Angela Guajardo $37.00 2/22/2019 We're routing for you Will!!
Doris Miller $55.00 2/22/2019 Love seeing the good updates for Will! God's blessings!
Lynn Drumm $20.00 2/22/2019
Breezie Ogilbee $100.00 2/21/2019 Go Will!!!
Kimberly Miller $55.00 2/21/2019 From Allistar's Gym Class, YMCA
Diane Bihl $200.00 2/21/2019 Keep Running, Keep Fighting. We love you !
Anonymous Donor $33.00 2/21/2019
Kimberly D Ramsey $83.00 2/21/2019
Stephen Sills $110.00 2/20/2019 Go Will! We love you buddy!
Corrie Beard $100.00 2/20/2019 WillPower!!
Lisa Palchak $40.00 2/20/2019
Robin Ward $22.00 2/20/2019
Sue Lim $50.00 2/20/2019
Kerry Shamaly $40.00 2/19/2019
Anonymous Donor $300.00 2/19/2019 Go Will! Go!
Melissa McHaney $25.00 2/19/2019
Kelly Wallis $50.00 2/19/2019
Anna Bock Mullins $25.00 2/19/2019
Anonymous Donor $33.00 2/19/2019
Tim, Emily, Owen + Molly Tokarczyk $80.00 2/19/2019 Sending you all of our speedy thoughts- go get it, Will!
James Williford $40.00 2/19/2019 WILL POWER!!!
Jonie Bulich $50.00 2/19/2019 Wishing you all the best Will. You have an awesome Mom, Dad and sister. Jane Tank is my sister so I keep up with your adventures by Facebook.
Anonymous Donor $20.00 2/19/2019
Paul Byers $155.00 2/14/2019 Run like the wind Will. Mimi and PopPop are cheering from Ohio
Tenille Koistinen $15.00 2/14/2019 Will you are our hero! You got this! Love the Koistinen’s (Melbourne, Australia) #willpower #hopeforjobe
Sarah Kunz $100.00 2/13/2019
Daniel Hart $100.00 2/13/2019
Christopher Luciano $265.00 2/13/2019
Nicole Double $200.00 2/11/2019 Good luck with training! Hope you all are doing well :) Love, The Doubles
Adria Keeney $1,025.00 2/11/2019 We love you Will! From all your fans at Global Shop Solutions
Jennifer Soares $50.00 2/11/2019 Go, Will, Go! Love, Jen, Mike, Eloise, and Mae
Anonymous Donor $1,000.00 2/10/2019
Christine Suter $50.00 2/8/2019
Kate Van Stratton $50.00 2/7/2019
Reba Stevens $100.00 2/7/2019
Lily Truong $100.00 2/6/2019
Michael Drieu $50.00 2/6/2019
Leigh Carman $82.50 2/4/2019
Linda Peloquin $50.00 2/4/2019
Gwen English $25.00 2/3/2019
Brittany Brewer $20.00 2/3/2019
Joseph Lude $55.00 1/31/2019
Aaron Wade $100.00 1/31/2019
David L Work $215.00 1/30/2019
Anonymous Donor $250.00 1/29/2019
Turner Reisberger $250.00 1/29/2019
Alan O'Donnell $105.00 1/29/2019
Ronald Dechiro $55.00 1/29/2019
Anonymous Donor $1,000.00 1/29/2019
Jason Fruge $22.00 1/29/2019 Go Will!!
Anonymous Donor $100.00* 1/29/2019
Josephine Shamaly $27.50 1/28/2019 Will, you’re an inspiration!!
Ryan Bailey $100.00 1/28/2019
Anonymous Donor $55.00 1/28/2019 Go Will!!
Steve Woelfel $105.00 1/28/2019 Go get 'em Will
Kim Tirlia $500.00 1/28/2019 Go Will! Power through!
Amber Helm $105.00 1/28/2019
Natasha Jeansonne $50.00 1/28/2019
Gaye Johnston $25.00 1/28/2019
Anonymous Donor $225.00 1/28/2019
Michelle Clark $100.00 1/28/2019
Namrita Gandhi $55.00 1/28/2019 God Bless Will!
Kevin Louviere $100.00 1/28/2019
Anonymous Donor $100.00 1/28/2019 Good luck Will - with God all things are possible my little friend
TIMOTHY WEST $100.00 1/28/2019 GOOD LUCK!!!
Susan Carman $110.00 1/28/2019
* offline donation