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Hi friends, Rita Weeks and George Lussier's questions have caused me to re-arrange and edit a post I sent earlier about our numbers as a PWP and CG community. The simple math below allows us to say that if the Udall Law is FULLY funded, then $100,00,000.00 would be invested to help 10,000,000 persons in our commuinty-- $10.00 each. Here is a way to arrive at a figure of about 10,000,000 American PWP's and CG's affected DAILY by Parkinson's: 3500 PWP's per Congressional District is an estimate from the APDA, and from my Maine State Senator's research staff, who discussed numbers with the APDA, before placing an actual estimate into the Maine 1998 Parkinson's Awareness Resolution, Senate Paper 868. Add to this estimated 3500 PWP's per District, approximately 6 family or paid caregivers for each PWP. That give us 3500 x 6 , or 21,000 caregivers per Congressional district. Add 3500 PWP's and 21,000 caregivers per District, and we get 24,500 people per Congressional District who are identifiable as part of the Parkinson's Disease Community.. There are 435 Districts in the United States. 24,500 people x 435 = 10,657,500 persons in the USA who are affected EVERY DAY by Parkinson's Disease! The 3500 per district is derived form the estimate of 1.5 million PWP's in the USA that both the NPF and the APDA use currently.. If a potential figure, including not-yet-diagnosed PWP's treatment, is closer to 3 million, the estimate of 10,657,500 people might be more truly something like 20,000,000 affected DAILY in the USA. Even 10,000,000 is a HUGE number of people. So, I would say, let's start acting like the politicians are RESPONSIBLE to help us--and be more ASSERTIVE. Comments on how to translate these numbers, and potential VOTES, into POLITICAL POWER, anyone? Ivan Suzman ^^^^^^WARM GREETINGS FROM^^^^^^^^^^ Ivan Suzman 48/11 [log in to unmask] Portland, Maine land of lighthouses 79 deg. F *********************************************************** On Thu, 30 Jul 1998 10:10:23 EDT [log in to unmask] writes: >Hi > >Attempts to gather information on PWP is admirable..... > >Push to get others to gather information about us is admirable.... > >I do recall taking quite a beating on this list a couple of years ago >when the >Nebraska registry was established by the >Unicameral.......why?......because of >rights of privacy for patients. How are you going to keep tabs >(without >double counting some folks) without identifying patients........or has >that >issue been settled and I missed it somewhere along the line? > >Where will the funding come from for this count? Are you willing to >forgo >research dollars that a pharmaceutical co might spend on research on >medication for a registry? Are you willing to spend Udall $$'s for >the head >count? Are you willing to have this database established now on a >national >basis? > >I do understand the need for #'s of PWP's...... > >Rita Weeks >