FED Founder Speaks with Enery and Commerce Committee

FED Founder & President, Joel Wood, participated in a “Conversation on Child Cures” with the Energy and Commerce Committee Chairman Fred Upton (R-MI), Ranking Member Frank Pallone, Jr. (D-NJ), and Rep. Diana DeGette (D-CO) on Wednesday, March 24, 2016. Joel, along with several other panelists, discussed the reality of facing rare childhood diseases, and the need for additional funding and support for research that could unlock cures. For a full report on the panel, please follow this link: https://energycommerce.house.gov/news-center/press-releases/all-access-pass-curesnow

What is Duchenne Muscular Dystrophy?

Duchenne Muscular Dystrophy is a relentless, cruel disease.  It is the world’s #1 lethal childhood genetic disorder.  The Foundation to Eradicate Duchenne (FED) exists to fund scientific research for treatments for today’s generation of boys and young men who suffer from Duchenne.

FED is a small group of families with sons who have Duchenne.  We are focused on leveraging the dollars we raise to the most aggressive research that is within reach of our sons.  This is an important distinction from other organizations in the neuromuscular community, with whom we do our best to work cohesively.  We are supporting clinical trials on drugs that have already crossed the threshold from theoretical and speculative.

Founded in 2001, the FED has raised many millions of dollars, and much progress has been made.  Duchenne was once a hopeless disorder that had a predictable trajectory – one that typically took away lives in teenage years or the early twenties. Today, it is difficult to establish an expected life expectancy based on strides that have been made.  But there are desperate needs to push Duchenne-specific therapies out of the scientific pipeline and into the marketplace.  We are, in three words: not there yet.

Amazing progress has been made, but we feel anguish for the dreams that are unfulfilled, for the lives that are cut far too short.  Our sons suffer in silence.