Originally Posted by glenntaj

--has used Mother Delores Hart as a celebrity spokesperson for the condition for a a very long time; she gets trotted out at most of the big neuropathy summits and sent to Capitol Hill on lobbying occasions.

Not to put any onus on Ms. Hart, who is nice enough, but I have criticized the Association on several occasions (including on these boards) for not making more efforts to recruit other celebrity spokespeople with the condition who, frankly, have more fame and would bring more attention to the condition than Ms. Hart. I have made analogies to the situations regarding celebrity attention and other neurologic conditions, and about how Michael J. Fox "coming out" as a Parkinson's sufferer, or how Annette Funicello, Teri Garr, Montel Williams, Jonathan Katz, and others talking about their multiple sclerosis, have focused attention on these disorders and helped with funding for research into causes and treatments.

Neuropathy has more sufferers, by far, than MS, Parkinson's, and MG combined, and yet one would never know it, with its much lower public profile. Remove diabetes from the list of causes and it seems no one who doesn't have it is aware of ANY of the other types (of which there are many, as we know). And yet, there are many celebrities out there with neuropathy who have for one reason of another have not chosen to be anywhere near as public and advocative as I feel they should. Mary Tyler Moore has concentrated on diabetes. Johnny Cash only mentioned his autonomic neuropathy in passing. Andy Griffith has almost never talked about his experience with Guillain Barre. And Glenn Beck has only mentioned his situation rarely. (He seems to have some form of small-fiber neuropathy, currently idiopathic. As much as it pained me, I actually wrote to him about the issue, but did not get a response--but hey, I'm a well-known local liberal/progressive.)

In sum, someone with a high profile going very public with his/her neuropathy, and speaking about it, would only be helpful. People would know they're not alone with the symptoms and the often mysterious search for a cause. And these people have to be out there; neuropathy is COMMON. (I wonder, for example, how many of our Representatives and/or Senators have it--I bet there are quite a few. I've suggested the Association poll Congress. That suggestion hasn't gone very far.)