National Organizations - Parkinson's Disease Message Board

arose · 08-09-2001, 11:31 AM

I have been dealing with Parkinson's disease for years but I am new to this computer experience. Over the years I have received publications from national organizations and I have found them helpful, but more recently I feel there is a lot of talk, a lot of 'Galas' with wealthy people, and a whole lot of pleas for more, more money from these organizations (to find the cure!), but very little action in truly assisting people with Parkinson's who are struggling in the present with this awful disease. I can't afford to fly to Miami for a gala with the TV stars. I never see on Lieberman's "Ask the Doctor" column any accounting of how all this money is used. The best action I have seen in the news has been the Michael J. Fox foundation. Also, I wonder how do we know the information on "Ask the Doctor" is reliable? Aren't the columns only the opinion of Lieberman? Perhaps I'm feeling somehat negative because I have been to a Center of Excellence, and I have seen Lieberman, and I was disappointed.
These organizations seem like an industry to me. How do we best help ourselves?

Pelicangirl · 08-16-2001, 08:33 AM

Hi Arose,

Yes, I too have been often disappointed by the "slick" magazines that are sent out and all the various PD organizations. Sometimes I think it would be better to have a newspaper-like magazine and spend some of that money on research. Then I'm told that you can't get money unless you have something that is eye-catching and has pictures of various celebrities. I have to admit that the celebrities have added something to the cause, but sometimes I wonder just how much we would have if it was only the "grass-roots" people contributed and all of their money went to research. I know we have to fund other aspects of the disease. I just don't know what the answer is.

Another thing that bothers me is all of the different organizations that are working on PD. If all of these people got together, maybe they would have enough money for a cure rather than different organizations working against each other. There is a rumor that the NPF and the APDA may be forming an alliance. Hopefully, this will happen. I assume there are some pretty big egos involved.

Yes, I agree that Michael J. Fox has given PD a boost. But his efforts are being channeled into yet another organization. If he would follow one or the other of the main groups, maybe this would help some of them to come together. I guess everyone has to do their own thing while we wait and wait. The cure was 10 years down the road at least 10 years ago and now it is still 10 years down the road.

Pelicangirl (aka Ruth)