lyndleymaddox's profile image - click for profile

Lyndley Maddox's Fundraiser:

Fueled by WILL Power at The Woodlands Marathon!

Lyndley's Photo
Lyndley's Photo
Lyndley's Photo
Lyndley's Photo
Lyndley's Photo
Lyndley's Photo

BENEFITING: CURE SANFILIPPO FOUNDATION

ORGANIZER: Will

EVENT: The Woodlands Marathon 2016

EVENT DATE: Mar 05, 2016

Lyndley Maddox

THE STORY:

Will Byers wrote -

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

$830

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Jennifer potokar

    $25

  • Emily and Matt

    $25

  • Tom Maddox

    $50

  • Aunt Sue and Uncle Kevin

    $50

  • Mom and Dad

    $100

  • Savannah and Hunter Fults

    $100

  • Ginny Hamby

    $25

  • Rech's

    $100

  • Mazzy and Elodie

    $100

  • Uncle Scott and Aunt Mikie

    $50

  • Elizabeth Kanfush

     

  • Anonymous

    $50

  • The SC Maddoxes

    $25

  • The Klinefelter's

    $50

  • The Dudro

    $50

  •  
  •  
  •  
 

166% Raised of$500 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 Dudro

The Dudro

DONATION: $50

3 years ago

The Klinefelter's

The Klinefelter's

DONATION: $50

Go Will Go! 3 years ago

The SC Maddoxes

The SC Maddoxes

DONATION: $25

3 years ago

Anonymous

ANONYMOUS

DONATION: $50

In Memory of baby Beckett Lane Medulan 3 years ago

Elizabeth Kanfush

Elizabeth Kanfush

3 years ago

Uncle Scott and Aunt Mikie

Uncle Scott and Aunt Mikie

DONATION: $50

3 years ago

Mazzy and Elodie

Mazzy and Elodie

DONATION: $100

3 years ago

Rech's

Rech's

DONATION: $100

3 years ago

Ginny Hamby

Ginny Hamby

DONATION: $25

3 years ago

Savannah and Hunter Fults

Savannah and Hunter Fults

DONATION: $100

3 years ago