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Good for you, Hilary and Anne. I haven't yet spoken to my congressmen in person, but have had the good fortune of having a letter I hand delivered to a member of Bond's KC office being faxed to the Washington D.C. office resulting in a phone call to me the next day from a staffer in his DC office. There is something much more effective about a person who is challenged with Parkinson's speaking up in person to someone who has contact with the lawmaker. My previously mailed letters had only gotten a lukewarm response about NIH funding in general. The phone caller said that although earmarking of NIH was not popular before, it is what is being done with Udall bill for Parkinson's research. I also sent a photocopy of my letter to the editor that was published in my local newspaper along with my hand delivered letter and have found out just yesterday that a similar letter I sent to the KCStar, a larger metropolitan newspaper in MO also was published on Friday, June 26, 1998. The real proof of how effective we have been is still to be seen. Come on list members, let your opinions be heard. Funding for research via the Udall bill is vital to each of us and should be vital to your congress. Noone is immune to the threat of parkinson's. If Hilary, Anne and I can voice our opinions to congress and to other community persons/leaders, why not you? You do count. If you don't know the senator or the representative, who in your community does? Can you write/call that person and ask if he/she has any idea how best to contact your lawmaker? You may have to admit that you have pd, or your loved one or friend , and that you don't have an extra $l00 million of your own to invest. What congress spends is yours and mine and if we don't ask for our piece of the budget, someone else will. Jeanette Fuhr 47/7mos. <[log in to unmask]> -Hilary Blue said in part:--------- > Let me introduce myself - I am Hilary Blue, a widow, 49 years old > with three teenage children. I was diagnosed with PD 16 years ago, > when I was pregnant with my second child - but I'd had symptoms for many > years before that. My friend Anne Gill was diagnosed just 6 months ago > - although she has had symptoms for many years, which she has been > fighting with yoga. An amazing lady - but that's another story. > We decided to attend the PAN Forum in DC recently, and frantically > started collecting signatures for a petition to our congressman. WE > were so proud, she with 250, and me with 150! > Then last week I found our that Tom Davies, our representative, > would be addressing a meeting at the Northern Virginina Jewish Community > Center. I thought this would be an ideal opportunity to present our > petition - little did I know how near perfect it would turn out to be. > Unfortunately , Sue Carter was unable to be present - and Anne and I, > two rank amateurs had to handle this on our own. > We didn't know this in advance, but it seems that everyone who was > anyone in the Jewish political scene was there - the room was > overflowing with money and power and influence - and every one signed > our petition. We had struck gold!!! These may not be the people who > signed the Udall Bill - but they know the people who did. And they are > the peoople who support the fund-raisers, - who buy the tickets to the > $1000 per plate dinners and so on. > Some of them were woefully ignorant about PD. They seemed not to > comprehend that at one p[oint in time I was tremendously dyskinetic and > almost incoherent. And then I calmed down, and Anne got the shakes. > Anne was wonderful - handled Tom Davis like a pro - reminding him > of when her son was his paper boy, and then thanking him personally > "on behalf of his loyal consitituents" for his support for the Udall > Bill -- and eliciting from him a response that he would continue to > support Parkinson"s Research, in particular the funding of the Udall > Bill. > But the importance of the evening was not that we collared one > Congressman and presented him with a petition. I think that we broke > new ground - and fertile ground at that. We sparked an interest in a > group of people who are practised advocates in their own fields of > interests, with many contacts and influences on the hil - who have now > discovered a new interest, a new vulnerability. After all, any one of > them may get PD. > We did it. Anne and I. Two naive amateurs. It took the right timing, > the right place, and a whole lot of luck. Think how much more YOU could > do, if you actually planned it !!!!!!!