Improve the Lives of People with Ehlers-Danlos Syndrome

Zebra Strong for The Ehlers-Danlos Society

By running the 2019 New York City Marathon, I am raising awareness and funds for The Ehlers-Danlos Society, a global community dedicated to improving the lives of those affected by the Ehlers-Danlos syndromes ("EDS"). Together, even a small amount can make a huge difference!

Why am I raising money for EDS?

This is a cause that is very near and dear to my family and me. In Summer 2018, my wife was diagnosed with a syndrome none of us had ever even heard of: Ehlers-Danlos. In the short time since then, she has faced many health challenges and her EDS diagnosis has pervaded the lives of our family.

In order to help raise awareness and funds for EDS, I am running the New York City Marathon on Sunday, November 3, 2019. Feel free to track me on race day on the New York Road Runners website, I’ll be the only Chediak running and likely the only person running in zebra stripes!

After years of running, this will be my first marathon and I can think of no better cause to support with my miles. I know you’ve all seen many similar fundraising campaigns before where runners need to raise funds to earn their marathon spot, but I earned my starting line spot the old-fashioned way - with a lot of running. Your greatly appreciated support will, however, help keep my legs moving across all five New York City boroughs over 26.2 miles on a cold November morning and, infinitely more importantly, will help the Ehlers-Danlos Society support its many programs and research studies to improve the lives of those affected by EDS. EDS research is woefully underfunded and awareness, even among the medical community, isn’t as widespread as it needs to be. I’ve never done a fundraising campaign like this before, but this cause is important. So, this time, I ask you to make any donation you see fit; every donation no matter the size is helpful!

What is EDS?

The Ehlers-Danlos syndromes are a group of 14 heritable connective tissue disorders that produce a spectrum of complex problems across multiple systems of the body. Hallmark symptoms include hypermobile joints, skin hyperextensibility, chronic pain, chronic fatigue, gastrointestinal issues, and tissue fragility. Each case is unique and severity may range dramatically, even within families. While EDS is often referred to as a "rare" disease, the latest estimates put incidence rates at about 1 out of every 2,500 to 5,000 people; making it not so "rare" after all. Chances are that whether you, or they, know it or not, you probably know someone that is affected by EDS. You may be asking yourself what the zebra has to do with EDS. Doctors are often taught in med school that if you hear the beating of hooves in the hallway, you should think "horse" and not "zebra". Sometimes, however, it really is a zebra! This why many EDS patients don’t get an accurate diagnosis for 10-20 years. Celebrities you may know that have publicly announced their diagnoses and struggles with EDS and its comorbidities include Lena Dunham, Sia, and Jameela Jamil. Learn more at the Ehlers-Danlos Society website.

About the Ehlers-Danlos Society

The Ehlers-Danlos Society is a global community dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions. Its goal is world-wide awareness and better quality of life for all who suffer from these conditions, regardless of geography.