Still Sunny…
I just came home from Midtown. The city is crowded today with tourists spending plenty of Euros. The dollar exchange is in a sorry state. I have to applaud www.parkinsonsappeal.com and their great work ( Martin , if you are reading this: I applaud you ! ). Their website has come along nicely with lots of good links and videos. Even this website is linked ! How cool! Word is getting around that a nurse can do much in the area of dystonia awareness, education and patient care referrals online. Still, I’m distressed that none of the dystonia groups in the US are talking or even attempting to collaborate with one another, even as Awareness week in June approaches in the US. I wonder if any of them read the Journal of Philanthropy ?They had a recent article on clashes between Foundations. I have resolved to not get involved in the political game of dystonia non-profits and to continue to do what I do best : Setting the PACE, which is our motto anyway. Why should one organization act as the only dystonia organization in the Western civilized hemisphere for patients and dystonia ?Each of us has something to give to the cause; it should be recognized and valued by all. I have heard that awareness of dystonia has reached a standstill. Awareness is not at a standstill. One has to reach out and motivate people. One does not need a “famous spokesperson” for the cause, one needs a good media story, a good pitch line and preserverance. No, I ain’t giving up- still writing to O-Magazine via omail@hearst.com . How about you ?
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