This January I decided to run the 2020 Chicago Marathon in order to raise awareness and support for research to find a cure for Duchenne Muscular Dystrophy (DMD) , a devastating disorder that my youngest son, Teddy had recently been diagnosed with. Friends Bonnie Pope, Emily Carr and Rachel Marino had planned to join me prior to the cancellation due to COVID. Although the marathon may have been cancelled, the race to end DMD is still going strong! "Team Teddy" has raised over $8,000 from friends, family, and complete strangers and we were given the chance to run Chicago once over the next three years.
In place of the Chicago Marathon, 14 local mom friends joined me in running our own socially distant 5K and 10K on Saturday, October 3rd along with other Ridgefield DMD warrior mom Jessica Curran, who's 10 y/o son Conner was the first boy with DMD to undergo promising gene therapy for DMD and their family started the foundation Kindness Over Muscular Dystrophy. We could not have had better weather and it was so incredibly inspiring and humbling to my family and me. There has been talk of making this event an annual tradition and we plan on making it happen. Any donations made by October 11th (the planned running of the 2020 Chicago Marathon) will be matched by another DMD family's organization, the Small Heroes Foundation.
Duchenne Muscular Dystrophy 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, which results in deterioration of the skeletal, cardiac, and pulmonary muscles. Most boys with DMD (90%) become non-ambulatory in their early teenage years, and many don’t live past their late 20’s. But with promising research, this does not have to be the normal! DMD affects approximately 1/5,000 live male births. About 20,000 children are diagnosed with Duchenne globally each year. Because the dystrophin gene is found on the X-chromosome, it primarily affects males, while females are typically carriers. There are also cases where the gene mutated without having a mother as a carrier. I recently found out that I am a carrier for DMD which means that any daughters have a 50/50 chance of becoming carriers themselves and any sons have a 50/50 chance of having DMD. Because DMD affects the heart, female carriers like myself are at small risk of having heart issues and cardiologist follow-ups are recommended every five years. Please help us put an end to the devastating disorder and support other families like mine by making a donation if you can.
If you prefer to mail a check, please send it to the following address and make note that the check is for "Team Teddy"/Chicago Marathon.
Parent Project Muscular Dystrophy
401 Hackensack Ave, 9th Floor
Hackensack, NJ 07601
All donations are 100% tax deductible.
Thank you for your support!