Torrington mom continues fight for Duchenne muscular dystrophy drug

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TORRINGTON — Mel Kelly of Torrington was the subject of this Mommy Minute in February.

The Torrington mom has two sons with Duchenne muscular dystrophy (DMD), a life-threatening, genetic disease that mainly affects boys. Both Liam (15) and Jacob (19) are in wheelchairs, robbed of their ability to walk, sit-up and bathe themselves.

When we first met Kelly, she was eagerly awaiting a date to be set to testify before a Food and Drug Administration Advisory Committee.  She – and other parents – were ready to implore the FDA for accelerated approval of an experimental drug called eteplirsen, currently in clinical trials.  They believe this drug will save lives.

On Monday, Kelly got her day in Maryland during an eleven hour meeting. According to a piece on Fox News: “More than 1,000 people packed a hotel conference room to push a deeply skeptical FDA…”

Read more from the Hartford Courant here.