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Ivan Suzman asked me to update the List on the progress Downeast by the Maine Parkinson Society. Last winter three young-onset Parkinson’s patients connected on the internet: Ivan Suzman, Greg Leeman and Karen Bardo, my daughter. They became convinced that Maine needed a group devoted to Parkinson’s to supplement the work done by the APDA support groups. We incorporated in June 1998, received IRS non-profit 501c3 status in September, have recruited a quality Board, drafted a business plan for 1999 and are now working on raising funds to sustain the process. Gleeman, 38/8, is President, Bardo, 45/2, is Vice President. Other directors are myself (a retired banker and CPA), a neurologist, a pharmacist, an investment person, a social worker, a lawyer and a nurse. MEPS is starting to receive good print media coverage. We have met young reporters who were surprised at the numbers of people impacted by PD. They have written good articles which is helping to educate Maine people on PD, one of our main goals. Our mission is to improve the quality of life for Maine PWP’s and their families. We will build a data base of Maine PWP’s, build a lending library and resource center and send newsletters to PWP’s, health care professionals, the media and Maine decision makers. Once we have raised the funds and satisfied IRS requirements to serve the PWP community, our second stage will address the caregiver problem of single PWP’s and family respit. These are ambitious goals and not a part time job. Greg and Karen are devoting much time to help the PD community. About one third of PWP’s are young-onset victims. This group with friends and professionals can take a leaf out of Greg and Karen’s book, and spread the word about this dread disease in every state in this country and abroad. The TV sign up is positive. However, our experience with the print media has proven that we can spread the story of the Parkinson’s community to thousands of Maine people. Copies of these articles and Joan Samuelson’s testimony to Congress have been of great help in approaching those who have the start up funds needed. It is said that every long journey starts with a small step. We have taken many small steps in six months. We are thumping on the table loudly for the PD cause. Wish us luck because we will need it. Harold L. Jones [log in to unmask]