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The Real Deal: Local Families Fight for Possible Life-Saving Drug

Updated: Monday, April 28 2014, 06:34 PM EDT
WATERVLIET--  Some are calling it a miracle, a new drug that's proving to slow or even stop the progression of duchenne muscular dystrophy.  The injections may very well prevent young boys with duchenne disease from losing the ability to walk and the drug may help those already in a wheelchair, live longer lives.  So far though, the FDA has not approved Eteplirsen for use.  Local families are joining a nationwide push to get the drug fast-tracked.
 
For years, Brian Schwenzfeier stole the show during MDA telethons on CBS6, singing beautiful songs and inspiring people to donate for a cure, "it was the most important thing in my life throughout high school and college," he tells CBS6.   But a few years ago duchenne took away his ability to do what he loves, "I can feel that I need to work harder to breathe and I have to use breathing machines like all throughout the night," he says.
 
Eteplirsen has slowed or stopped the progression of duchenne muscular dystrophy in test patients, giving hope to younger boys who still have muscle function that they'll be able to keep it and in some cases maybe even regain strength but for Brian and older patients who've already lost that function, this drug may literally be the difference between life and death.  "It's showed up to a 15% increase in strength and breathing and that's really one of the worse things that happens for an aged person…You don't want to say it's a miracle cure but in certain situations it's a miracle that it changes the progression and that's something we've been waiting for my whole life," Brian says of a life he's spent trying to help others too.  "We've raised so much money, done so much through the MDA, you would think that finally, there would be a better plan in place for finally when the drug came, let's get to whoever we can, to extend lives," Brian says.
 
This week, the FDA provided guidance on a pathway to early approval for Eteplirsen and the drug's maker, Sarepta Therapeutics, now plans to submit a New Drug Application for approval by the end of 2014.  Sarepta also plans to initiate a number of additional clinical trials to advance the development of the drug.  But for dealing with duchenne now, time is of the essence.
 
Brian says if he can get the drug, he's hoping he'll be able to get back to his love of music, "maybe I wouldn't be a performing vocalist but I could definatly have enough energy to go back to my joy which is teaching music."
 The Real Deal: Local Families Fight for Possible Life-Saving Drug


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