If the MDA really cared about the lives of people with neuromuscular disease, they would surely end the pitython, dump JL, apologize for forty-two years of inflicting pain, and get on with doing whatever good they can do, led by the individuals and families affected.

if your family members have not had any thing given to them that is not provided by your insurance from MDA… be it leg braces, wheel chairs, repairs to equipment, rides to and from doctor’s visits and an opportunity to go to summer camp then your local MDA isn’t doing their job and you should contact the national office in Arizona and let them know. I work with our healthcare service coordinator and i have set up PO’s for all of the above and paid invoice’s for all of the above… put your foot down and say something… are your family members registered with us because we cant help if we don’t know who you are…

What a powerful post! I’m not sure if you remember me, but I used to live in Denver. I last saw you in Washington, DC, when I was living there. It was with Not Dead Yet at the Supreme Court, maybe a couple of years ago — my memory is not the best. You had Adrienne with you.

Now, I am in Rochester, NY, where I have been for almost a year. I just wanted to thank you for such a powerful post, and to say hi.

Anita

I think the response is not to give money to MDA at all. If someone is really wanting to give money to research, I guess giving it directly to the hospitals that do the research might be better.

Frankly, the money would be much better spent, and would benefit people with all types of disabilities by giving it to advocacy organizations. Give money to your local ILC, ADAPT chapter, and if you are in Colorado, to organizations like the Colorado Cross-Disability Coalition. These are the organizations that really make a difference in the lives of people with disabilities. Giving money for research into neuromuscular diseases does nothing to improve the lives of people living with the diseases. For 40 years we have heard Jerry Lewis claim we are millimeters away from a cure. Yeah, and I have some swampland in Kansas to sell you.

I ask because I’ve blogged on this too at http://reunifygally.wordpress.com/2007/09/03/why-deaf-people-should-boycott-jerrys-telethon/ and some of the people who left comments are arguing that it’s still worthwhile supporting MD research because some forms of it do limit the life span, and one person says she doesn’t like what Jerry says either but supports what he does … apparently because she doesn’t see any other way to get money into research for MD. I can’t help but wonder if the campaign against Jerry’s pity- er, tele-a-thon might go further if it were coupled with more education for other ways people can give. Any advice on the best way to respond to some of the comments that have been left at my blog?

If you do choose to come look at my telethon post then I hope you’ll also stay and look around at some of the posts I’ve done about the ADA Restoration Act of 2007, which I think is another subject that people with disabilities should be up in arms about. And BLOGGING ABOUT!