The Race to Yes, a national campaign by families with children facing death from Duchenne Muscular Dystrophy achieved an important milestone just after 8pm EDT last night when the 100,000th person signed their White House petition urging the U.S. Food and Drug Administration to approve a breakthrough drug that has been shown to halt the progress of the disease.
“Mr. President, This is for our children. We are fed up with the waiting. We deserve something more than a form letter. Please, don’t send us a get-well card. We deserve a ‘yes’ from the FDA,” said Benjamin Seckler whose son Charley has Duchenne. “Can you hear us now? More than 100,000 people joined The Race to Yes in the last 30 days. What has the FDA done for our children during that time?”
The White House pledges to respond to petitions receiving a minimum of 100,000 signatures in 30 days. The Race to Yes reached that milestone in 27.
The Race to Yes campaign emerged when parents began receiving identical form letters from the FDA after advocating approval of a drug that was shown to work after more than two years of testing. Duchenne is the number one genetic killer of children. Families are urging that the drug be fast-tracked for the sake of the thousands of children who are dying.
Early last month, seven prominent researchers and physicians appeared before the FDA to urge that it approve the drug under a 2012 law giving it the authority to help treat diseases like Duchenne. Thirty-eight members of the U.S. House and Senate have written the FDA urging it to use the law to approve breakthrough drugs.
Another “Race to Yes” organizer, Jenn McNary, spoke on behalf of her two sons with Duchenne, one who has benefited from the trial of the breakthrough drug while the other is waiting on the FDA approval, “Mr. President, What do we have to do next? As my sons would ask it, ‘Are we there yet?’ The wait has cost one son his independence and will soon cost him his life, while my other son who has access to the therapy is thriving.”
Organizer Marissa Penrod summarized the sentiments of the 15,000 families directly impacted by Duchenne in the U.S by saying, “We are proud of getting this petition to the President’s desk, but we are not stopping here. We will continue to tell this story and demand answers until there is a treatment for every child with Duchenne.”