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
