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Teddy's Rough Riders


Welcome to Teddy's Rough Riders' donation page! Teddy’s Rough Riders is a newly formed non-profit that supports research into a cure for a very rare genetic condition called STXBP1 Disorder. 

This organization was formed by the family and friends of Teddy Taylor, who was diagnosed with STXBP1 at just 6 weeks old. After he had seizures at birth, Teddy's doctors ran genetic tests and discovered he has a very rare genetic mutation that means he cannot produce enough of a protein that is needed for normal brain function (the STXBP1 protein). Teddy's parents were informed 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. 

Teddy at 1 day old in the NICU

It has been over a year since Teddy’s diagnosis, and his family is now part of an incredible parent-led organization that funds research into a gene therapy cure for this disorder. In the past several months, 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 three 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.

Teddy at 6 months old enjoying tummy timeTiny Teddy Roosevelt on Halloween

Teddy's Rough Riders is hosting a 5K race at White Rock Lake in Dallas on October 28th.  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.

You can sign up for the race here:  Come join the charge!

If you would like to learn more about our organization and sponsorship opportunities, please feel free to reach out to us at [email protected]