Just a reminder!!!
 

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...

Jenn, I worked in marketing for over 20 years and, yes, it's all about getting the word out. But not necessarily in a big way. The volunteers that would normally be the main support for a non-profit would be either the patients or their families. MGers often don't have the energy for what they need to do let alone volunteering.

I'm not putting down the organization, simply pointing out that MG is still not known to most people. Heck, most "healthy" people don't want to even think about medical issues. ;)