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Topic This Years PAN Awards Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2010.08.26 17:27
Got my newsletter from PAN today and they announced their awards are on Oct 6th.
Diane Rehm, on her show that morning says she will hopefully be interviewing Lonnie ALi, wife of Mohammed Ali. It would be interestin gi think to hear 2 celebrities who have spouses with PD. Although they are od an older age, it seems they both know and understand this isn't an old folks disease. Just my insight on them. One of the honorees that night is one of my very own SC Reps i wrote in my disabliity fight, John Spratt. I don't know the reason they choose him, whether or not he has PD or works with PAN or what, never saw anything in his bio's. Just passing on some info......

By Lynnie2 On 2010.09.05 20:44
What is PAN?

By LOHENGR1N On 2010.09.06 00:04
PAN is the Parkinson's Action Network, founded in 1991 (Joan Samuelson founder and Parkinson's Patient), Started as grassroots to lobby congress to provide more funding for research into Parkinson's and finding cure. Gained more recognition as mentioned in book and movie Saving Millie.

In 2007 did not renew contract with Joan effectively firing Her but offering to keep her on in advisory non-paying position. Also that year made monthly conference calls mandatory for State coordinators and Congressional coordinators however muted participation in these calls referring questions and comments to internal bulletin board on site. Effectively cutting off discussions of topic's and as many of Us Coordinators suffered with Parkinson's Disease caused undue hardship expecting Us to type and post running debates and questions when everyone knew keyboards aren't Parkinson's friendly. That's when I left the organization. Sorry old memories ran amok for a few minutes. Take care, best of luck and hang in there.

By karolinakitty On 2010.09.06 08:37
Yeah AL... i don't agree with their "policies" if that's what you call it, but i like getting the newletter because it keeps me updated on things going on with PD.

I have found that most of the organizations are more interested in raising the big bucks then what is actually happening with the patient. I personally have had my differences with medical fund raising groups which i won't bore anybody with. I don't like them and won't give to them, just my preference and experience.

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