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I am ever so glad you are fighting with me and am grateful you have been doing this for some time too. Just tell me when and I'll vote for you. Hugs Michel ----- Original Message ----- From: "Linda J Herman" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, August 17, 2001 9:07 PM Subject: Re: Mis-impression of advocacy--caution needed > Camilla's letter to the editor was a convincing and well thought out > reply the column questioning the motives of advocates. And I think > Kathleen summed up very well the motivation of many to fight for the > right to pursue all avenues of research. > It is believed that there is a genetic factor involved in the development > of PD, especially in young onset Parkinson's. I have two children in > their 20's -- is there any parent with Parkinson's , or any other chronic > disease, who doesn't fear that their children may someday suffer the same > fate, especially if the research is impeded by politics, patent disputes, > and a lack of funding. We must put an end to this disease now. > I was with a group of PWP and caregivers who recently met with a local > Republican congressman and we witnessed first hand the power of putting > a face on the disease. We were prepared to discuss all the facts about > funding, the Parkinson's research agenda, had fact sheets from PAN ready > to talk about, expecting to have at least a half hour of his time, if not > more. His earlier appointment ended up running 15 minutes late and as we > entered the office he said he was sorry to have to tell us that he was > expecting an important conference call in about 10 minutes!! So we spent > whatever time we had just telling him about what Parkinson's had done to > our lives and our families -- 3 out of the 4 of us had been forced onto > disability; one of us had battled PD for 13 years already, and he is only > 39. Another was facing upcoming DBS surgery and didn't know if his > insurance would pay for it.Most in our group had never lobbied before. > The COngressman asked a few questions, but mostly listened and then asked > what he could do. Before he left to take his phone call, he agreed to > support the requested funding for Parkinson's related research at the > NIH, Dept. of Defense and VA Parkinson's Centers, and also to join the > Parkinson's Working Group in the House of Representatives. > We also gave him a copy of "Saving Milly" which he asked us all to sign. > I don't think he had any doubts about our reasons for wanting to put an > end to Parkinson's or thought that we were being "selfish" by telling > him our personal stories. > > Linda > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn