Community Update

Letter to the Editor

Families of boys with Duchenne Muscular Dystrophy just filed
a petition with over 100,00 names on the White House website to push approval
of the experimental drug Eteplirsen by the Food and Drug Administration.

DMD is a genetic disorder characterized by progressive
muscle degeneration and weakness. The disease primarily affects boys. Over
time, sometimes as early as the teen years, the damage done by DMD to the heart
and lungs can and does become life-threatening.

As a father who watched his son suffer from this hideous
disease, I can’t even begin to tell you the pain and suffering this causes to
the child, siblings and parents.

Dr. Jerry Mendell of Nationwide Children’s Hospital in
Columbus, Ohio, who designed the drug trial, said eteplirsen is a first of its
kind therapy that has shown superb results so far, and has absolutely no side
effects.

The Food and Drug Administration, in all its wisdom is
looking to do another study. The FDA has to use common sense here, and forego
any lengthy study which could take years and cost the lives of thousands who
suffer from DMD.

Those affected by DMD need eteplirsen now, not years from
now. Please FDA…do the right thing!

Mark Veilleux

22 North Belgian Road

Danvers, MA

978-232-2306