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Charge! Teddy's 5K

Sat October 26, 2024 Directions

Charge! Teddy's 5K

Donation Goal: $20,000

Hello,

My name is Jill Taylor, and I am the President and co-Founder of Teddy’s Rough Riders, and proud mom to Teddy Taylor. Teddy's Rough Riders is a recently formed non-profit that supports research into a cure for a very rare genetic condition called STXBP1 Disorder. 

Teddy was diagnosed with this disorder after genetic testing was done to determine why he was having seizures at birth. His doctors told us that he would never learn to speak, he may never learn to walk, and that there was no cure or treatment other than medication to control his seizures. He will likely need full-
time care his entire life, and there is not enough known about the disorder to tell us his life expectancy. To say we felt devastated and hopeless does not begin to describe the depth of emotion his father and I felt at that moment.

It has been over two years since Teddy’s diagnosis, and we are now part of an incredible parent-led organization that funds research into a gene therapy cure for this disorder. In the past year, an institute at the Children’s Hospital of Philadelphia has been established to develop therapies that they hope to have ready for clinical trials within the next two years! This is such a rare disorder (only 1,000 known cases in the US) that there is no incentive for pharmaceutical companies to develop treatments - if there is going to be a cure, it will happen because of fundraising by the friends, family and community members of children with STXBP1 Disorder.

Our non-profit will host a 5K race at Audubon Park in Garland on October 26th. All of our proceeds will go to the STXBP1 Foundation to help fund the ongoing research into a cure. We would be so honored if you would join us to be a part of this incredible moment in history - where we put an end to STXBP1 and other genetic disorders.

Come join the charge!

Jill Taylor

$6,770

Raised of $20,000

$0
$20,000

Top Donors

$6,770 Raised By 47 Donors

$1,000 on behalf of Doctors Implants
$1,000 on behalf of Eric Matus
$1,000 on behalf of Richard Buchter
$500 on behalf of Carol Cawyer
$400 from Anonymous
$250 on behalf of Declan, Isaac and Joel
$200 on behalf of Bonnie & Barbara Kee
$200 on behalf of Heather Stanton
$200 on behalf of Jill and Nathan Taylor
$120 on behalf of Brad Cawyer
$100 on behalf of Anne Langston
$100 from Anonymous
$100 on behalf of Caroline Munson
$100 on behalf of Elizabeth Petersen
$100 on behalf of Kelley and Pete Michalski
$100 on behalf of Linda Petersen
$100 on behalf of Lois Buchter
$100 on behalf of Michele Swearengen
$100 on behalf of Rebecca Jorgenson (Faiella)
$100 on behalf of Richard Buchter
$100 on behalf of Sandra and Ben Hubenak
$100 on behalf of Sandra Feinglas
$50 on behalf of Beth FitzGerald
$50 on behalf of Charles Miller
$50 on behalf of Christine Edwards
$50 on behalf of Davin Haley
$50 from Anonymous
$50 on behalf of The Millertons
$40 on behalf of Aaron and Sonya Fritz
$40 on behalf of Michael Schuit
$30 from Anonymous
$25 on behalf of Beth Ward
$25 on behalf of Carl Kee
$25 on behalf of Elizabeth Brown
$25 on behalf of Ivy Choe-Branstetter
$25 on behalf of Katelyn Evans
$25 on behalf of Russell Murdock
$20 from Anonymous
$20 on behalf of Erika Burkhardt
$20 on behalf of Jennifer Bennetch
$20 on behalf of Katie Fulkerson
$10 on behalf of Beverly Nuehs
$10 from Anonymous
$10 on behalf of Jessica Decena
$10 from Anonymous
$10 on behalf of Kathryn Faiella
$10 from Anonymous

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Donation Attribution

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