Saturday, January 5, 2013


UPDATED AUGUST 1, 2013-Jennifer McNary Mother of Max and Austin-CLICK HERE.

JANUARY 5, 2013


I received an e-mail below from Jennifer McNary Mother of Max and Austin. Please take a minute of your time and sign her worthy petition to the FDA. These are the "small" things that each of us can do to make a difference in the lives of others who need our help, in this case a simple signature in their support to keep her kids alive.

SIGN Jennifer's Petition by clicking on this sentence.

Both of my sons have the same debilitating disease  -- Duchenne Muscular Dystrophy -- that's kept them dependent on wheelchairs to get around. But now only one of my sons has access to a "miracle drug" that is saving his life.
Max was fortunate enough to take part in a study of a breakthrough medication, and now he can walk on his own for longer than he ever could. But Austin wasn't as lucky. 
Without access to this miracle drug, I watch Austin suffer silently as his brother thrives. The FDA has the power to make this drug available to kids like Austin by putting it through the "accelerated approval" program. It could otherwise take years for this important drug to be available to kids like Austin, denying him the same chance as his brother at a better and longer life.
Duchenne's is a disease that causes loss of muscle, to the point where children stop walking and eventually cannot breathe on their own. It is a slow death sentence with no effective treatment available. Watching Max make progress with this medication has been nothing short of a miracle, but bittersweet -- Austin grows steadily weaker with each passing day. 
Eteplirsen has helped one of my sons accomplish what I never believed possible. And this year, a law was passed that allows the Food and Drug Administration (FDA) to expedite the approval of experimental medications that have been proven to work.
The company that produces Eteplirsen is going to officially ask the FDA soon for accelerated approval because of its miraculous trial results. I am doing everything I can to make sure the FDA knows how crucial this drug is to the survival of my sons. But they need to know that the public supports an accelerated approval process too -- and since they have the power to act, your signature will add the pressure they need to move quickly.
Thank you for your help.
Jennifer McNary
Mother of Max and Austin
Saxtons River, Vermont