venting about resources

Posted: November 17th 2009

kathtz

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I think this is an awesome site and it is free for everyone! Thanks to mito action for being there for me and my family when we needed information and support.

I just need to vent that I find it upsetting to learn that people sick with mitochondrial disease who don’t have a lot of money to spare are unable to take advantage of many of the services from bigger mito organizations like the UMDF and are even turned away when they have questions because they don’t have a particular “level” of membership. I think it’s horrible.

mitoscottie's picture

I totally agree with

Submitted by mitoscottie on Sun, 12/06/2009 - 8:02am.

I totally agree with you! UMDF has lost sight of the very people they organized themselves to represent. I could respect them more if they would forget about their mission to "support" and just focus on raising money towards a cure. Many adult patients feel the same way as you do!
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Jean Shepherd

British Columbia, Canada