Quote:
Originally Posted by mrsD
Well, I'd like to add that we on PN forum here, have often discussed how having a "spokesperson celebrity" might help our cause and get more research done.
PN is very common, and more people have it now than MS and PD combined.
The Neuropathy Association is very weak, and let me give you an example of how disappointing:
The Today show was to have Neuropathy on it one day, and this spread over the web and we all watched. You know what it was?
Standing outside with Al Roker and the holding up of a T shirt to buy! Nothing else! no explanation, no time allotted to educate.
I searched Paula Abdul's charity work, and could not find any contributions listed to RSD or its research. She has over 10 other charities however, she
participates in.
Very unlike Montel Williams, Michael J Fox or even Celine Dion, who are very active in speaking for their cause.
Celine is very active in Cystic Fibrosis research.
This is an example of real activism by a celeb:
http://www.celinedionweb.com/celine-...-fibrosis.html |
It's a sad story.. As when ever our illness has a glimmer of a chance for some recognition, it doesn't get the true air time we deserve... I realize Paula did address her RSD on the Dr. Oz show, 20 minutes of pain chat and light show on nerve travel, then on to her anti aging products and natural remedies.. nothing mentioned on the View, except her history of ill fate with her cohosting x factor show.. I felt the View didn't want her to bring up her illness due to the diversion it would take on her interview, that was not what they were after.... It's like everyone is afraid to give us air time.. Why?? My take is because we do not have a positive outcome, no cure nor do we have the artillery in place to support our number of sufferers in comparison to other illness such as cancer.. There is Constant recognition, fund raising, awareness to support the number of those illness verses our number of RSDer's... Only detrimental to us as other non-sufferers, see it as starting on the ground floor to help us, even talk about us.. Like it would be too much work to help us...or even bring attention to us.. UGH!!!
Just my thoughts...
Hugs, Kathy