Quote:
Originally Posted by AnnieB3
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
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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...