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William Harshaw wrote: > > List Members, > > Remember that politics is merely the art and craft of deciding policy. I > don't think P.I.E.N. should endorse specific candidates, but we could have a > few litmus test questions for all candidates, for example: > 1) What are the public policy implications of neurodegenerative diseases > becoming the second-largest killer, surpassing cancer, by the year 2040? > > 2) How would you allocate funding amongst the neurodegenerative diseases? > > 3) What are your views on the use of human foetal cells and porcine cells > in research and clinical trials, and ulitimately in regular surgical > therapy? > > Q2 is a real minefield. For example, should you fnd research to cure MS or > PD? > > MS usually strikes in the second and third decades. Finding the causes and > developing cures would mean that those who othrwise have MS - likely about > three quarters of a million people would have: > i) career earnings on which they would pay income tax > ii) lifetime contribtions to social programs > iii) a normal family life, with children, &c > ********************************************************************************** > PD, on the other hand, usually strikes in the sixth or seventh decades when > the estimated milion and a quarter victims are: > i) past peak earning power, hence not a growing source of tax revenue > ii) are consmers rather than contributors to social programs > ********************************************************************************* This is precisely the sort of attitude that angers me so much. I have nothing against People with MS getting their fair share of govt funding etc. BUT, here from within our own ranks from on of the most informed, active, influential fellow pwps, we get this antediluvian definition of PWPs as being OLD and PAST IT. I was 24 when i started showing definable symptoms of PD. Today, I was finally told i will be getting my first SSI check next week. And that i am now eligible for medicaid. SInce my husband died nearly 5 years ago i have not had any medical coverage, lived on bereavement benefits which were stopped several months ago, had my children placed in foster care as i was deemed unfit to care for them because of the PD, am currently being subjected to home invasion by social workers trying to trip me up in my parenting role....... I should love to be paying income tax, and making contributions to lifetime social plans - and most of all, i would love to be having a normal family life. AND I AM NOT THE ONLY ONE There are YOPD groups springing up all over the USA, and more tragic stories of the devastating effect this disease has on the lives of its younger victims. And we need to be recognized, and we need to have our problems dealt with, just as much as we need that cure. Because, until that cure comes, we somehow have to survive. If I exist, there must be others out there just like me. Hilary Blue (50 / 24 / 33 ) ************************************************************************************************ > Carefully framed questions will elicit responses which will enable list > members to mae an informed decision > > -----Original Message----- > From: Bonnie Rowley <[log in to unmask]> > To: [log in to unmask] <[log in to unmask]> > Date: Thursday, September 23, 1999 4:10 PMor > Subject: Re: NOT A POLITICAL SITEa > > >All, > > > >I happen to disagree w/Mary - for the same reasons that other have already > >stated. > > > >But I would like to add that this topic would be welcome on SPARKLE (also) > > > >Bonnie > > > >In a message dated 9/23/99 3:05:29 PM Eastern Daylight Time, > [log in to unmask] > >writes: > > > >> > >> This list is supposed to be about Parkinsons compare symptoms - > >> compare meds and side effeccts > >> what type of neuro is best? how does everyone cope etc , have a good > >> cry and/or just get things off your chest ... > >> There are enough other web site to get this stuff on and it > >> should not be overloaded w/ politics !!! > >> > >> I left the web once because of too much > >> "extra curricula" activities & comments that had nothing to do w/ > >> Parkinsons. > >> > >> If you want to TALK & ORGANIZE POLITICAL ACTIVITIES... PLEASE > >> JUST START A NEW WEB SITE !! > >> THANKS > >> > >> MARY E SANFORD > >> [log in to unmask] > >> Ocean City Md 21842 > >> > >> > >