Majorly HUGE historic moment!!! The FDA finally approved Eteplirsen. We’ve supported this therapeutic approach since 2005, and for the past three years we’ve been fighting for its approval. You helped make this happen. We need more medicines to help more kids, but for today be proud. Be happy. Be invigorated. We are making a difference.
Charley, a 17-year-old spitfire, is our original inspiration. Over the past 12 years we have met many other children whose colorful personalities and intense passions deepen our resolve to end Duchenne.
Updates & Inspiration
September 13, 2017
New trial for a ‘molecular band-aid’ to help DMD hearts and lungs
Several DMD organizations recently teamed up to fund a Phase 2 clinical trial of a new therapy for Duchenne muscular dystrophy (DMD) – Carmeseal-MD. Carmeseal-MD…Read More
August 31, 2017
Mom Starts Fund to Find Cure for Duchenne Muscular Dystrophy After Son’s Fatal Diagnosis: ‘There’s No Way I Can Give Up’
People.com When Charley Seckler was 3 years old, everyone seemed to notice his big, strong calves. “People always said, ‘Charley, you’re gonna be a soccer…Read More
July 31, 2017
“Let’s just say that my life is a combination of bitter and sweet.”
“Let's just say that my life is a combination of bitter and sweet.” I try not to make a habit of plagiarizing my kids, but…Read More
July 22, 2017
What’s next for exon skipping, the personalized medicine that produces dystrophin?
The first exon-skipping treatment for DMD was approved last year, but this is no time to rest on our laurels. We're funding the development of…Read More
April 28, 2017
What are neutrophil elastase inhibitors, and why do they hold promise for DMD?
Charley's Fund, Duchenne UK, and Joining Jack recently announced a collaborative grant to Dr. Dada Pisconti of the University of Liverpool in England. With this…Read More