Sugar Shack Gift Card

Who loves donuts? We do!

You have the power to narrow the distance between today’s grim reality for boys with Duchenne muscular dystrophy, and a future where this disease is no longer fatal. Help us offer hope to thousands of families dealing with the harsh reality of Duchenne muscular dystrophy.

All proceeds raised by the Foundation to Eradicate Duchenne, a 501c(3) organization, are designated for the most cutting-edge research to find treatments, and ultimately a cure for Duchenne muscular dystrophy. Every dollar counts as each goes towards adding new clinical trials and expanding research for new treatments, bringing thousands upon thousands of families closer to hope.

We are grateful to have the support of Sugar Shack again this holiday season. The first 50 donors to donate $50 or more to FED by December 8 at 12 noon will receive a $25 gift card to Sugar Shack as a thank you! If you are one of the first 50, you will be notified within 1 week. We’ll update this page when we run out, but don’t wait because these will go fast!

Leadership

Board of Directors

Joel Wood, President | Scott Sinder, Secretary | James Wood, Treasurer | Dan Carson, Director | Dave Heil, Director | Brad Todd, Director

Advisors

Dr. Eric Hoffman Dana Wood Monica Heil Tina Carson

Staff

Michelle Payne, Executive Director

Financial & Tax Information

FED strives to be transparent in our work. Here are links to our most recent IRS form 990 and audited financial statements. If you have questions, please do not hesitate to contact us.

What is Duchenne Muscular Dystrophy?

The words “incurable” and “untreatable” have been closely associated with Duchenne. It is an X-chromosome disease that afflicts boys, and it will never be eliminated through genetic screening because the dystrophin gene is the largest gene in body – times ten – and thus much more prone to have flaws that are not inherited. The trajectory of this disorder is insidious. Duchenne boys typically are not diagnosed until they are four years old or older. They tend to get better in the so-called “honeymoon” stage, which usually lasts until the early teenage years. But their muscles are deteriorating and cannot regenerate. Dystrophin is part of the chemical glue that holds muscle cell walls together, and those walls eventually collapse and are filled with collagen that causes fibrosis. First the legs give out, slowly, then, the arms and upper body. The disease moves from skeletal muscle to smooth muscle tissue. Lungs and hearts deteriorate. Corticosteroid treatment forestalls the muscle deterioration, but steroids have terrible side effects such as making bones brittle. Unlike many single-gene-defect disorders that only strike at certain ethnicities or demographics, Duchenne is a disease that does not discriminate – it is the world’s leading lethal inherited disease, afflicting one in 3,500 boys. The incidence rate among all races is identical. As the world becomes more conscious of issues of racial disparity, it is clear that standards of care are resulting in disparate quality of life and certainly life expectancy among sufferers of different races. You get the picture. Duchenne Muscular Dystrophy is excruciating, ruthless, sadistic, and painful. More than anything, it is cruel. The FED’s mission is to identify, leverage, and bring to market treatments that will benefit ALL sufferers of this disease.