Skip to content
willbyers's profile image - click for profile

Will Byers' Fundraiser:

Fueled by WILL Power at The Woodlands Marathon!

Will's Photo
Will's Photo
Will's Photo
Will's Photo
Will's Photo
Will's Photo
 

WOW!!
February 28, 2016

WOW, we hit our goal of $10,000, and we are close to taking over the 2nd place spot in the Charity Challenge contest! This is the final week  See more

BENEFITING: CURE SANFILIPPO FOUNDATION

EVENT: The Woodlands Marathon 2016

EVENT DATE: Mar 05, 2016

Will Byers

THE STORY:

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 5 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 are slated to start 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
Blog: http://everyeleventhwithlittlebuddy.blogspot.com/

 

For more information on MPS III, please go to:

http://mpssociety.org/mps/mps-iii/

DONATE

To This Fundraiser

$18,090

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Fred Schilling

    $25

  • Larry & Judy Stoner

    $50

  • Elizabeth Kanfush

     

  • Charlene & Jeff Kirsch

    $50

  • Park Family

    $25

  • Chad and Alina

    $200

  • Kim Williams

    $300

  • Anonymous

    $50

  • Garrett

    $50

  • Ryan, Jennifer, and Zoey Forman

    $50

  • Stephen & Natalia Sills

    $500

  • Pat McGrievy

     

  • Abay A.

    $25

  • Paul Chandler

     

  • Corrie Beard

     

  • The Payne Family

    $25

  • Beverly & Saul

     

  • Kendra Pilati

     

  • Saundra Bradley

    $100

  • Beth Kendall

    $100

  • Cody and Bridget Marburger

    $40

  • Cravey Family

     

  • Lutz Family

    $25

  • Jim Bryan

     

  • Linda Peloquin

     

  • Rene and Ginny

    $25

  • Sarah and Jason McClain

     

  • Kris Frick

     

  • Jennifer Freeman

    $25

  • Veronica Medrano

    $25

  • Johanna Schuepbach

    $25

  • Derrick & Kristen

     

  • The Rippsteins

     

  • Marty and Pamela Forman

    $50

  • Debbie Rutledge

     

  • Anonymous

    $50

  • Lea Frye

     

  • The SC Maddoxes

    $25

  • keith brents

    $500

  • Kyle Bradshaw

    $50

  • Linda Cano

    $100

  • Miranda Miller

    $25

  • Matt and Lorraine Miller (Miranda's parents)

    $30

  • Rosalie Miller

    $25

  • Charles Johnson

    $180

  • Deanna Putman

    $50

  • Anonymous

    $100

  • Jennifer Powers

    $25

  • Anonymous

     

  • Anonymous

    $100

  • Mike and Kim Drieu

    $50

  • Gloria Ballin

    $100

  • Ronnie and Susan

    $100

  • Toedter Family

     

  • Cory, Christie, Dexton & Claira

     

  • Janie Garcia

    $50

  • Lisa Falco

    $50

  • Sharon & Jeff Wenzel

    $50

  • Tom, Karen, Annie, & Blythe Peloquin

    $50

  • Ellingson Family

     

  • Barbara & Carly Harmon

    $25

  • The Durst Family

    $25

  • Grandma & Grandpa Joe

    $50

  • Aaron Wade

     

  • The Mattia Family

    $50

  • Phil & Nicole McGuiney

    $50

  • Cupari

    $25

  • The Woodlands British Ladies Club

    $100

  • The Heasley's

    $50

  • Kim Scott

    $50

  • Lindsey Long

    $25

  • The Klinefelter's

    $50

  • Mendoza Family

    $25

  • Woelfel Family

    $100

  • Susan Freed

    $50

  • Stephanie Follis

    $15

  • Helen Wells

     

  • Lisa Gauthier

    $50

  • Angie Brinkmeyer

    $25

  • Mark Romick Family

    $100

  • Reba

    $50

  • Friends of WILL Power

    $75

  • Kacy Bates

    $25

  • Adam

    $100

  • The Ogilbees

    $50

  • Brett, Katrin & Henry

     

  • Nelson Family

    $130

  • Abby Grace Ferguson

     

  • Anonymous

     

  • Anonymous

    $50

  • Will

    $100

  • Tirlia Family

     

  • Anonymous

    $50

  • Linda D. Tharp

    $400

  • Atif & Sheeba

    $100

  • Janelle Short

    $25

  • Super Sam

    $100

  • The Dudro

    $50

  • Nancy Yaguda

     

  • The Scarborough Family

    $50

  •  
  •  
  •  
 

121% Raised of $15,000 Goal

Fundraise for this Campaign

The Team: $18,090 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Will Byers

Amount Raised

$6,165

 

41% Raised of $15,000 Goal

Fundraiser Title

Stephanie Matthew Peloquin

Amount Raised

$3,190

 

64% Raised of $5,000 Goal

Fundraiser Title

Laura Brents

Amount Raised

$1,500

Fundraiser Title

Aleah Esparza

Amount Raised

$1,225

 

123% Raised of $1,000 Goal

Fundraiser Title

Lisa Gauthier

Amount Raised

$900

 

113% Raised of $800 Goal

Fundraiser Title

Eve Kneller

Amount Raised

$890

 

178% Raised of $500 Goal

Fundraiser Title

Lyndley Maddox

Amount Raised

$830

 

166% Raised of $500 Goal

Fundraiser Title

Valerie Byers

Amount Raised

$800

 

80% Raised of $1,000 Goal

Donor Comments

The Scarborough Family

The Scarborough Family

DONATION: $50

2 years ago

Nancy Yaguda

Nancy Yaguda

2 years ago

The Dudro

The Dudro

DONATION: $50

2 years ago

Super Sam

Super Sam

DONATION: $100

Keep fighting Will! Good luck tomorrow Eve and everyone running! 2 years ago

Janelle Short

Janelle Short

DONATION: $25

2 years ago

Atif & Sheeba

Atif & Sheeba

DONATION: $100

2 years ago

Linda D. Tharp

Linda D. Tharp

DONATION: $400

Go Wild Will Run like the Wind 2 years ago

Anonymous

ANONYMOUS

DONATION: $50

In memory of Blair Virgin 2 years ago

Tirlia Family

Tirlia Family

2 years ago

Will

Will

DONATION: $100

Have fun! 2 years ago