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Hi Janet, Glad to see that on-line communications is working and supportive of efforts to have grassroots voices heard. Several people from Take Charge! Cure Parkinson's (TCCP) had the opportunity this past month to meet meet with Tom Berdine, president of Young Onset Parkinson's Association at a meeting we hosted in Boca Raton. Paula Wittekind, also invited, joined us for a 3-day marathon session, the end of which resulted in our inviting YOPA to partner with us on our project, "With Parkinson's, Don't Order the Soup," several years in the making. The details of what will be a traveling art-poetry exhibit, co-created by two people with Parkinson's, Bill Harrington, poet, 46, diagnosed at 29, and Lillian Dyck, artist, 68, diagnosed at 49, can be found on our site at www.cureparkinsons.org. We're delighted to be working with Tom Berdine and YOPA. He will be joining us as a special guest via telephone interview tomorrow on a radio program airing live from South Florida on 1470 AM radio and accessible world-wide via the Internet, Wednesday April 16, 10:30 a.m. to 11:00 a.m. EST (Florida, USA) time, at www.WNNHealthTalkRadio.com. The show is called Good Work and we've arranged for a special part 2 of the program on Wednesday as the show usually airs on Fridays. Mayor Steve Abrams of Boca Raton will be with us, live, in the studio, along with Joel Wilson, age 55, diagnosed at 49. Joel, a successful business man, had to scale back his businesses and basically retire from the stressful and demanding schedule due to his Parkinson's symptoms. Other guests interviewed via telephone include former Attorney General Janet Reno, Dr. Diane Murphy, the director of Neurodegenerative Cluster at NINDS, Bill Harrington, the talented poet, whom many of you know as [log in to unmask] (bill harrington), myself, and of course the hosts, Joy Siegel, Cliff Weidberg and Ron Hersey. I hope many of you will join us tomorrow morning to hear about the launch of two national and international events each of which welcomes your participation. First, is the exciting national touring art-poetry exhibit, "With Parkinson's, Don't Order the Soup," and second, is Take Charge with Tulips ~ Plant a Garden of Hope. Details for both are on our site. We will be launching this event with Mayor Steve Abrams, in the studio, tomorrow. Tune in for details about how your city can participate. Sincerely, Alison Landes Founder/ Chair Take Charge! Cure Parkinson's, Inc. 1489 W. Palmetto Park Road Suite 442 Boca Raton, Florida 33486 Tel: 561.620.1970 Fax: 561.395.8424 E-Mail: [log in to unmask] Web site: www.cureparkinsons.org In a message dated 4/15/03 4:01:33 PM Eastern Daylight Time, [log in to unmask] writes: > Subj:Re: Parkinson Awareness Pin / pd orgs > Date:4/15/03 4:01:33 PM Eastern Daylight Time > From:[log in to unmask] > Reply-to:<A HREF="mailto:[log in to unmask]">[log in to unmask]</A> > To:<A HREF="mailto:[log in to unmask]">[log in to unmask]</A> > Sent from the Internet > > > > hi all > > on Wed, 9 Apr 2003 tom berdine wrote, in part: > >>> http://www.youngparkinsons.com/pinorderform.htm > >>> Awareness Month Pin - April is Parkinson's > >>> Awareness Month. Order your pin today! > >>> All profit will be donated to the Young > >>> Onset Parkinson group - a 501(c)(3) > >>> corporation. Make checks payable > >>> to Zephtex Industries, Inc ... > > and then on Sat, 12 Apr 2003 i wrote, in part: > >> does yopa have financial statements available? > > and then on Sun, 13 Apr 2003, tom berdine wrote, in full: > > Janet, > > As a fellow young onset Parkinson's patient, at > > the now ripe age of 36, and the President of the > > Young Onset Parkinson's Association whose board > > consists of all young onset, I will answer these > > concerns openly for you. > > > > First I invite you to visit us at www.yopa.org > > and my personal site at www.youngparkinsons.com > > as you may find some answers there. > > > > To answer your first question. Yes YOPAs financial > > records are available. I will gladly send you a > > copy if you would like. YOPAs current net worth > > is $600, six hundred dollars. We do not enjoy > > the budget, or paychecks, generated by the > > millions that the more well known organizations > > bring in. There is much YOPA could do in awareness > > & support programs if we were fortunate enough > > to have but 1% of that pie! > > > > Please note that none of us at YOPA receive any > > salary for our continuous and time consuming > > efforts. Two of the five of us, all > > Parkinsonians, are on disability. Three of > > us are struggling to hold down jobs in order > > to care for our children & families. I am 80% > > disabled, military medical retirement, but > > have recently began the stressful & physically > > tiring climb into a new career. > > > > Zephtek Industries is the company, > > http://www.personalizedcause.com, > > whom is making, taking orders, and shipping > > the pin. The pin generates a mere $5 per sale > > to YOPA, to date we have sold around 20. We, > > like many fundraisers, use these type programs > > due to ease of setup and product delivery. > > I do the same on YoungParkinsons.com using > > Café Press and Amazon.com. I in turn donate > > the small percentages from those sales to > > YOPA. > > > > This past Christmas YOPA spearheaded a support > > campaign which raised $500 for PWP who were > > identified to us as needing a little help. Five > > PWP were in turn sent a YOPA Christmas card > > with a $100 Wal-Mart gift card. Of the 2 > > families who replied, one gave his children a > > Christmas they otherwise would not have had > > & the other bought much needed jackets. > > > > On 26 April 2003 YOPA is leading a national > > team of 45 PWP in the NY Unity Walk. This > > team has raised over $21,000 for research for > > the event. > > ( > http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=8004&lis=1& > team= > 50384 ) > > > > Last October we held a top-notch symposium with > > national level speakers & attendees. > > > > I followed with great dismay the issue with the > > pseudo-Parkinson's group in Canada and I hope > > they get what they deserve. As you point out > > they hurt things for smaller start-up grass > > roots organizations. > > > > I assure you, as I think the many fellow PWP I > > have been fortunate enough to meet on my journey > > so far would also, YOPA intends to be a Parkinson's > > group supporting their fellow PWP, in any form > > we are physically & financially able to. > > > > The Internal Revenue Service has determined that > > the Young Onset Parkinson's Association is EXEMPT > > from federal income tax under section 501(a) of > > the Internal Revenue Service Code as an organization > > described as in section 501(c)(3) effective > > 4 April 2003. We have just registered with > > GuideStar.com. > > > > I hope this post answers your questions & concerns. > > > > Feel free to call me at home, 505-293-5612, or > > email [log in to unmask] if you wish. > > > > Sincerely, > > > > Tom Berdine > > President > > Young Onset Parkinson's Association(YOPA) > > ( http://www.yopa.org/ ) > > > hi tom > > and thank you so much for your detailed reply! > > soliciting money from the public is a privilege not a right > and gaining the benefits of a charity license or IRS permit > comes with obligations and responsibilities > including transparency in finances > > recent > experience with a newby canadian pd org > to the tune of 500,000.00 > and not so recent > experience with an old established american pd org > to the tune of 1,000,000.00 > have left many of us ultra wary, justifiably so, imho > > the Parkinson Society Canada > ( http://www.parkinson.ca/ ) > has their most recent financial statement online, > and i dearly hope that all pd orgs follow their lead > > in a prior listserv message reply to you, i mentioned > that i was not able to access either of your web-sites, > so i may have asked for information which > was already available on-line > > if so, i apologize for the duplicated effort > and am appreciative of your candour > > by the way > since i have determined that my pd was probably caused > by multiple trauma in 1981 at my age 34, and > symptoms appeared in 1985 at my age 38, > i'd guess that we have a lot in common! > > > janet paterson: an akinetic rigid subtype, albeit primarily perky, parky > pd: 56-41-37 cd: 56-44-43 tel: 613-256-8340 email: [log in to unmask] > my newsletter: http://groups.yahoo.com/group/newvoicenews/ > my website: http://www.geocities.com/janet313/ > Alison Landes Founder/ Chair Take Charge! Cure Parkinson's, Inc. 1489 W. Palmetto Park Road Suite 442 Boca Raton, Florida 33486 Tel: 561.620.1970 Fax: 561.395.8424 E-Mail: [log in to unmask] Web site: www.cureparkinsons.org ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn