feature-2014-02-takesthehill

The Race to Yes Takes The Hill

If you’re visiting the Capitol Complex today, you’re likely to meet a band of sisters – six moms of children with Duchenne. Quite literally the team is “Running the Race to Yes” in an effort to visit the offices of 100 U.S. Senators and each of the 435 Members of Congress carrying an urgent message for the FDA – “Say Yes!”

The winter sprint coincides with Rare Disease Day, an international awareness raising event focused on educating policy makers with timely information regarding uncommon, often fatal diseases. The Race to Yes Team is calling on the FDA to stop delay for the Accelerated Approval pathway of proven Duchenne therapies. The effort highlights the FDA’s lengthy, needless delay for suffering children.

The parent-led effort is accompanied by a national social media campaign #racetoyes.