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Aubrea Schupp's Fundraiser:

Fueled by WILL Power at The Woodlands Marathon!

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BENEFITING: CURE SANFILIPPO FOUNDATION

ORGANIZER: Will

EVENT: The Woodlands Marathon 2016

EVENT DATE: Mar 05, 2016

Aubrea Schupp

THE STORY:

Will Byers wrote -

We are Fueled by WILL Power and the boys are running The Woodlands 2k Fun Run 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

$720

MONEY RAISED
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  • A & C Schupp

    $200

  • Anonymous

    $50

  • H & R Andrepont

    $100

  • L&P W

    $50

  • Katherine Pinkerton

     

  • Anonymous

     

  • Joanne

    $20

  • Graham Family

    $25

  • Ken Keller

    $25

  • Keating family

    $25

  • D. Burke and A. Eubanks

    $25

  • The Martin family

     

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36% Raised of$2,000 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 Martin family

The Martin family

Will Power! 3 years ago

D. Burke and A. Eubanks

D. Burke and A. Eubanks

DONATION: $25

3 years ago

Keating family

Keating family

DONATION: $25

3 years ago

Ken Keller

Ken Keller

DONATION: $25

Also prayers 3 years ago

Graham Family

Graham Family

DONATION: $25

3 years ago

Joanne

Joanne

DONATION: $20

Tiffany Schupp 3 years ago

Anonymous

ANONYMOUS

3 years ago

Katherine Pinkerton

Katherine Pinkerton

3 years ago

L&P W

L&P W

DONATION: $50

Praying for Will 3 years ago

H & R Andrepont

H & R Andrepont

DONATION: $100

3 years ago