UPDATED AUGUST 1, 2013-Jennifer McNary Mother of Max and Austin-CLICK HERE.
JANUARY 5, 2013
HELP SIGN PETITION FOR JENNIFER MCNARY MOTHER OF MAX AND AUSTIN
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
Mother of Max and Austin
Saxtons River, Vermont
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