I was under the impression that the meeting yesterday, intiated by the advocacy groups, was with the FDA to urge AA. I understand that it was not the meeting between the FDA/Sarepta where the company would get decide whether to file for AA. So my question is, who did the advocacy groups meet with yesterday? Was it just congress members? Are they scheduled to meet with the FDA at some point this week?
Simp, I do enjoy reading your posts but if you could substantiate your claims, such as the one yesterday where you said things were going great, I think we would all appreciate it.
Finally, I believe there were some on this board who went to this meeting yesterday. How come everyone is so tight lipped? Very little info, updates or feedback has been brought back to this board. I certainly appreciate those who took the time to travel to Washington in support but everyone is so hush-hush. Jim, you were apparently there but you have refused to share any details with us. Not sure why.
zoey-I went to the meeting and have posted many messages both here and on twitter. If your not not on twitter you should be, that is where you get the most useful information. I have a full-time job and a family, I don't have time to sit and write on a MB all day. I'm a little put-off by your message. Do some DD for yourself. I was at the meeting talking to the family's talking to Max and others, observing how well they moved around versus children who were not taking the drug. If you don't even know what the meeting was for then you need to work on your DD a little harder.
I'm always suspicious of anybody who says they know something that others don't, and when called on it, can't produce, just tell people to go learn for themselves.
Still, this guy is from up the street from my old home in Spotsylvania, so I'll cut him some slack, and believe him until proven otherwise. Though I do wish he'd be a little more forthcoming with the data he learned. I do empathize wih him & job/family time constraints, but also, in the time it took him to do that post, he could have copied/pasted from twitter all that she was asking.
Jim, my post was not meant to be rude or to insult you. I was just trying to gain some clarity on what happened at the meeting yesterday. As I said, i and it appears many others, thought it was a meeting with the FDA. It turns out we were wrong. I just wanted to know who the groups met with, what was said and how things went. Yes, I appreciate everyone who took the time to go. I was surprised, given the gravity of the meeting, that those who went did not give much detail on who was there, what was talked about etc. Most of the messages were cryptic at best. You and others are under no obligation to provide us these details but i am interested in hearing about them.