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Old 06-02-2011, 07:49 AM
Jenn220 Jenn220 is offline
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Join Date: May 2009
Posts: 18
10 yr Member
Jenn220 Jenn220 is offline
Junior Member
 
Join Date: May 2009
Posts: 18
10 yr Member
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Quote:
Originally Posted by AnnieB3 View Post
http://www.myasthenia.org/AboutMGFA/MGFANews.aspx

Since they moved to New York, I haven't heard much about the organization. I know there are chapters that get out there and do things but MGFA does not have a national presence.

Thanks for the reminder.

Annie
Wow.... that's a sad commentary that the MGFA is not seen as having a national presence. Is it because people don't hear what they are doing and supporting? What would give them a national presence?

It seems to me (from their website that Annie linked to) that they do have a number of things going - the national conference that's held annually,a national Walk-a-Thon that started this year (and has raised just over $275,000), informational podcasts, supporting research... and yet it seems people don't know anything about that which makes me wonder if it's just a matter of needing to improve communication / marketing, or if its something else...
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