Sarepta Therapeutics, Inc. Message Board
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New article tweeted by Jenn McNary. Meeting FDA friday?
Posted: Feb 13, 2013 4:55 PM EST Updated: Feb 13, 2013 8:12 PM EST
By Bridget Barry Caswell - bio | email
WASHINGTON -
A Vermont mom will have to wait a few more days before presenting her petition to the Food and Drug Administration.
Jennifer McNary of Saxtons River wants the FDA to accelerate approval of a potential breakthrough drug for children with Duchenne muscular dystrophy. Two of McNary's sons have DMD, but her older son, Austin, did not qualify for the eteplirsen clinical trials because he uses a wheelchair. So, while he declines, her other son, Max, who IS taking the drug, continues to improve.
McNary was planning to present her 170,000 signatures to an FDA representative Wednesday morning during a meeting on Capitol Hill.
"It was really emotional. Lots of tears. It was also really empowering to be able to speak. The FDA did not show up, but we still do plan to deliver the petition in a private meeting with the FDA that another nonprofit group called the Abigail Alliance has been able to set up for us," McNary said.
That meeting is now scheduled for Friday. McNary says she is hopeful the FDA will expedite approval of the drug. But time is of the essence. Her son Austin is now 14. The average age of survival with Duchenne is 20.-
the FDA was never coming to a public cheerleading event like the one on wednesday
that was never the case
for jenn to have a private meeting with woodcock and temple on friday is the best possible outcome you could ever imagine if you think about it
watch the november video of temple and the february video of woodcock
that woodcock is now involved personally is the dream -
this delay was a GIFT
Mcnary is now meeting with drs woodcock and temple, both of whom have been in available video's making public presentations that are very bullish in terms how they view BT and AA
whether it was wednesday or is tomorrow is irrelevant
that woodcock and temple are meeting with her, ON ANY DAY, is max relevant and is a major signal -
the FDA doesn't give a 2 #$%$br />
amazing
prepare for phase 3
if this is how they treat a mom imagine how they will treat the company
Fxck me- 2 Replies to starfe11
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I am starting to see and agree with your line of reasoning. This was / is the chance of a life time for the FDA to come out looking like the good guys. Instead, they are stiffing the patients.
Starting a letter and phone call campaign to my congressman and senators now...
#$%$ off..)
BRM.Sentiment: Strong Buy
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this has GSK's footprints all over it
these are bad people and want to hear from MDA/PPMD/CURE and even ACTION
no ore money from me till i hear them speak up
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