Team Teddy 5k in Ridgefield to raise funds and awareness for Duchenne Muscular Dystrophy

The third annual Team Teddy 5k, to raise funds and awareness for Duchenne Muscular Dystrophy, is happening on Sunday, October 2, at 9am, at Barlow Mountain Elementary School.

Registration donations for the run go directly to Parent Project Muscular Dystrophy (PPMD), the leading advocacy, education, and research organization in the U.S. for Duchenne, founded by a mother of two boys with the diagnosis over 20 years ago. To learn more, register, or donate, please go to Team Teddy 5k.

This local grassroots fundraiser was begun in 2020 by Kate White as a replacement for her scheduled fundraising run for Duchenne Muscular Dystrophy at the canceled 2020 Chicago Marathon. Fourteen local friends and families participated in the first run. In 2021, through word of mouth, the Team Teddy 5k grew to about 40 participants and each year it continues to grow in raising awareness and funds to find a cure for Duchenne.

Kate and her husband Justin are parents to Teddy (4) and Caiden (7), both students at Barlow Mountain Elementary School. Teddy was diagnosed with Duchenne just shy of his second birthday and the couple quickly joined forces with other families in the fight for a cure.

Duchenne is a genetic disorder characterized by the progressive loss of muscle due to the body’s inability to make dystrophin, a muscle building protein. It is a multi-systemic condition, affecting many parts of the body, and results in deterioration of the skeletal, cardiac, and pulmonary muscles. Most boys with Duchenne become non-ambulatory in their early teenage years, and many don’t live past their late 20’s due to heart failure or respiratory failure. Duchenne affects approximately 1/5,000 live male births and an estimated 20,000 children worldwide are diagnosed each year. Because the dystrophin gene is found on the X-chromosome, it primarily affects males, while females can be carriers and exhibit some symptoms, including cardiac issues. There are also cases where a gene mutation can occur without the mother being carrier.

There is no cure for Duchenne, but research is exploding in the field of gene therapy and gene editing and a cure is within reach.  2022 brought promising news to the White family as Teddy became eligible for and is currently participating in a two-year gene therapy trial at the University of Rochester.  Three gene therapy drug companies are undergoing FDA trials and have demonstrated a delay the loss of precious muscle, though not a cure. Gene editing with the use of CRISPR is being tested in lab mice currently and has the possibility of changing the trajectory of the rapidly progressive, irreversible disease that is Duchenne. Your participation and donations will directly impact boys with Duchenne just like Teddy, including other boys in Ridgefield like Conner Curran and Bazi Albaneri.

This year’s run/walk 5k will take place at Barlow Mountain Elementary and be an out and back flat course along North Street to Wooster Street and back. Register by September 15 to guarantee participant shirts.  Child tickets not required but all sold will include a Team Teddy t-shirt. This is a charity run with a running clock but not a chipped running bib. This year's run/walk 5k will include a sensory art station for children graciously provided by 2 Blue Hens Art Room.

Race course: Team Teddy 5k 2022 - MapMyRun