Charley's Fund Admin

Last week Sheryl Sandberg -- CEO of Facebook, billionaire, best-selling author and, according to Forbes, the 7th most powerful woman in the world -- posted…

SUMMER 2016 SNAPSHOTS al fresco dinner with Hayden "stand up" paddleboarding with Wilson firepit with Jackson and the ladies There have been some heart-wrenching delays…

When my teenage Charley was 3 years old, a nice doctor with a gentle smile handed him a death sentence. It was impossible to fathom,…

A boy with Duchenne at Monday's FDA hearing on eteplirsen. On Monday, the FDA convened an advisory committee meeting to review eteplirsen, a precision medicine…

For several years now, I have been advocating for the advancement and approval of a new drug called eteplirsen being developed by Sarepta Therapeutics. My…

I feel crushed to have learned that the boy in the HT-100 trial who was recently hospitalized has died. We do not yet know the…