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hi all in my humble opinion this is a superb effort! thank you to the PDF! and congrats to my cyber-sibling parkies Mary Yost and Margot Zobel yowsa! and three hurrahs for Grace the pd care bear! she's Grrrrate! janet <---- Begin Forwarded Message ----> Subject: The PDF News Date: Thu, 27 Jun 2002 13:43:53 -0700 Welcome to your first online issue of The PDF News, our quarterly newsletter! Because of your interest and support, we will be providing this to you via email in the future. We hope that it will help you keep up-to-date on the latest research, patient care, and advocacy efforts that are so vital to us all -- as well as some of the top news and changes here at the PDF. In this email, we have summarized several key stories below. Please note that a full version of this newsletter is posted on our website at: http://www.pdf.org/aboutpdf/publications/news2002sp/news_2002_spring.html Read on ... and thank you again for your commitment to fighting this devastating disease. --------------------------------------------------------------- NIH NAMES PD RESEARCH TARGETS --------------------------------------------------------------- The government's leading medical research agency -- the National Institutes of Health (NIH) -- has released a report card on the quest for the cause and cure of this debilitating neurologic disorder. This new report cites six research areas in particular as priorities: - "TRANSLATIONAL RESEARCH" that links basic and clinical studies -- sometimes referred to as the bridging of the space between "bench and bedside." - NON-MOTOR ASPECTS OF PARKINSON'S, such as mood disorders and digestive complications. - THE DEVELOPMENT OF SO-CALLED "BIO-MARKERS" that would enable doctors to track how fast and far Parkinson's has developed in a patient. - GENE-THERAPY RESEARCH in animals. Only when the procedure has been shown to be safe would research be extended to human beings. - THE IDENTIFICATION OF NEW ANIMAL MODELS for Parkinson's studies. - THE SYSTEMS OF THE BRAIN THAT PRODUCE DOPAMINE -- the chemical "messenger" that is deficient in people who have Parkinson's. Much of the material for the NIH report came from comments and suggestions made at a consortium of scientists and leading laypersons, convened by NIH on January 7-8, 2002. --------------------------------------------------------------- LOVE, SEX & PARKINSON'S DISEASE --------------------------------------------------------------- Love in a long-term relationship can be difficult even in the best of situations. But having Parkinson's disease should not be a deterrent to showing your partner the love you have -- whether you are the patient or the spouse. Both partners need to make every attempt to make the expression of love as warm and tender as possible. If a fully physical sexual relationship is no longer possible or wanted (by either or both individuals), it becomes even more important to find ways to show your partner that the love between you endures -- sometimes a gift as simple as a flower or chocolate can make a tremendous difference. Since there are several "levels" on which Parkinson's disease can affect a sexual relationship -- physical, medical, and even cosmetic -- it's very important to talk to one another. Share your fears, concerns and worries. Also, read and learn as much as possible about Parkinson's disease so that the very human fears each of you might have now and in the future can be put into perspective and properly handled. --------------------------------------------------------------- PD RESEARCH PROJECTS --------------------------------------------------------------- One section of the new NIH report on the Parkinson's Research Agenda lists some of the significant recent scientific discoveries at Parkinson's research centers. These include: - The role that genetic mutations can play in PD; - The relationship between normal and abnormal declines in the motor system; - The value of stem cell research; - More widespread effect of PD on the nervous system than was previously thought; - Increased linkage between environmental agents and PD; The report also outlines how the work of scientists in basic research that is not specifically related to Parkinson's can nonetheless yield valuable insights into the workings of PD. --------------------------------------------------------------- PDF LEADERS ARE ACTIVE AT AAN MEETING --------------------------------------------------------------- Several PDF leaders were prominent at the recent American Academy of Neurology (AAN) meeting in Denver, Colorado. These included - Dr. Stanley Fahn (Scientific Director of PDF and President of AAN); - Dr. Timothy Pedley (PDF Board Member and Chair, AAN Science Committee); - Dr. Christopher Goetz (Chief of Movement Disorders at Chicago's Rush-Presbyterian St. Luke's Medical Center, a leading PDF grantee, & Co-Chair of the AAN Session on Dopamine Agonists & PD); and - Dr. Lewis P. Rowland (President of PDF; Board Member of the AAN Education & Research Foundation and Editor in Chief of Neurology Today, the monthly AAN newspaper). To view pictures of the April 16 ceremony for the AAN's Annual Movement Disorders Award (which is endowed by the the PDF) where the work of - Dr. Thomas chase was recognized, please visit our website. --------------------------------------------------------------- BEARS WHO CARE ABOUT PD --------------------------------------------------------------- What comes to mind when you think of 'Care Bear'? This warm, cuddly, snuggly, cutie of a stuffed animal may be a distant relative of the 'Teddy Bear' -- icon on the national scene for generations -- but he is at the same time very different from his cuddly cousin. The message of the 'Care Bear' is deeper than a snuggly, warm something-to-hold-on-to. His message is that we are all a lot better off if we help one another and treat each other as we would like to be treated. Caregivers are the backbone and mainstay of people with Parkinson's as well as many others afflicted with similar neurologic, degenerative, or chronic illnesses. The organization behind one of these bears is "H.O.P.E. -- Helping of People Everywhere." According to one of the creators, the Parkinson's Disease Bear is named "Grace" because 'she' represents the loss of 'grace in motion' that many PWPs experience. Grace was created, according to the story that accompanies her, to "honor and remember those touched by Parkinson's disease". Another organization that has sent us similar information is The Charity Bear Company of Saegertown, PA. Kathy and Jill Hasenkopf, mother and daughter, create bears for a variety of "cares." The Parkinson Bear is coming soon -- be sure to ask them about it! --------------------------------------------------------------- THE VOICE FROM WASHINGTON --------------------------------------------------------------- Washington is most important to the Parkinson's community for one simple reason: there is no potential greater source of funding for research than the federal government. While private funds are invaluable -- and are frequently the catalyst for cutting edge science -- the majority of funds for Parkinson's research come from the National Institutes of Health (NIH). There are many reasons for advocacy, but advocacy for funding is at the top of the list. For those of you who have reached out to your elected officials, we offer a heartfelt thank you. Your letters, phone calls, and meetings with Members of Congress, yielded tremendous dividends last year. While we are poised to build on our momentum from last year, Congress and the President are facing a shrinking budget. They need to know that we in the Parkinson's community are on the precipice of real breakthroughs if sufficient resources are applied. The backbone of our grass-roots campaign is for your elected officials to hear from you, to talk to you, to meet you, to see you. These are the efforts that will help to ensure that the great strides made in working toward a cure for this devastating disease don't go unnoticed. --------------------------------------------------------------- AROUND & ABOUT THE COMMUNITY --------------------------------------------------------------- PARKINSON'S UNITY WALK RAISES AWARENESS OF PARKINSON'S DISEASE On Sunday, April 14th, close to 6,000 walkers gathered in sunny Central Park to participate in a two-mile walkathon to carry out event founder, Margot Zobel's, vision to bring PD to an end one step at a time. TEAM PARKINSON SETS NEW FUNDRAISING RECORD AT LOS ANGELES MARATHON On March 3, 2002, seventy two athletes, many with PD, set a new record by raising over $90,000 for Team Parkinson when they participated in LA Marathon events. Team Parkinson, an official charity of the LA Marathon, was founded by Mary Yost three years ago to increase Parkinson's disease public awareness and raise funds for research. PARKINSONG The Parkinson Alliance of Princeton, NJ presented the 2nd annual ParkinSong concert to benefit PD research on Saturday, April 13th at Council Rock High School in Newtown, PA. Originated in honor of Selma Litowitz of Lawrenceville, NJ, ParkinSong is dedicated to her and all others facing the challenges of Parkinson's disease. THE RICHARD LINN MEMORIAL: ANNUAL SNOWFEST Due to lack of snow, the annual snowmobile fundraiser in Crystal Falls, Michigan (originally scheduled for mid-January) had to be cancelled. However, countless supporters of the Richard Linn Memorial sent in contributions to help advance the research efforts of the Parkinson's Disease Foundation. --------------------------------------------------------------- We hope that you found this issue of The PDF News valuable. The next issue will be on its way in few months. This disease continues to devastate far too many lives ... and your support and friendship mean so much to us. Warmly, Robin Anthony Elliott Executive Director <---- End Forwarded Message ----> ps to robin elliott 'devastation' is as 'devastation' does ... i have not been and will not be devastated by pd i have been challenged by pd and being challenged makes me and all of us strong janet paterson: an akinetic rigid subtype, albeit primarily perky, parky pd: 55/41/37 cd: 55/44/43 tel: 613 256 8340 email: [log in to unmask] smail: 375 Country Street, Almonte, Ontario, Canada, K0A 1A0 a new voice website: http://www.geocities.com/janet313/ ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn