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Multiple System Atrophy News - March 2002 Table of Contents 1. MSA Annual Patient Conference Rescheduled in Boston May 3 - 5, 2002 2. MSA Donations 3. Announcing the European Multiple System Atrophy Study Group 4. Boston Globe article on MSA 5. New fact sheet explaining Olivopontocerebellar atrophy (OPCA) 6. News from the Center for Neurodegenerative Disease Research ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 1. MSA Annual Patient Conference Rescheduled in Boston May 3 - 5, 2002 (Contributed by Don Summers [log in to unmask]) We're back on track for Boston!!!!! The Boston Meeting for MSA Patients, Families & Researchers has been re-scheduled for May 3rd thru 5th, 2002 As initially scheduled, the meeting will take place at the Holiday Inn, Logan Airport. Again, a block of rooms has been reserved in the name of "THE SDS/MSA SUPPORT GROUP". Reservations may be made by calling either the hotel direct at 617-569-5250 or the Holiday Inn toll free number, 800-465-4329. When requesting room reservations, please use the following identifier code: 2SDS The rooms are reserved at $129.00 per night. The facility is within a mile of the airport and offers free shuttle service to and from the airport. Call the Holiday Inn, Logan Airport from the free phone near the baggage claim area. Handicapped rooms are available. Please inform the staff of your special needs when you register and when you arrive. GENERAL MEETING SCHEDULE Friday, May 3rd 7:00 PM -- Registration and Social Hour Saturday, May 4th 8:00 AM -- Buffet Breakfast 9:00 AM -- Meeting begins 12:00 Noon to 1:15 -- Lunch 1:15 to 5:00 -- Meetings Continue Sunday, May 5th 9:00 AM to 10:00 AM -- Continental Breakfast 10:00 AM to 12:00 Noon -- Wrap-up session and general business meeting (A detailed schedule will be available at registration.) Dr. Roy Freeman of Beth Israel-Deaconess Medical Center will be our host and has arranged for several guest speakers. There is no cost for the meeting. Scheduled meals are provided by the SDS/MSA Support Group. Your lodging, transportation and other meals are at your expense. Please e-mail me [log in to unmask] if you plan to attend. In your e-mail please include the following: 1. Your name 2. Your home city 3. The number of people attending This information is urgently needed to finalize food services! Don Summers President SDS/MSA Support Group 1-866-SDS-4999 email: [log in to unmask] website: http://www.shy-drager.com ----------------------------------------- 2. MSA Donations These are two of the most popular options for MSA donations in the USA. If you need suggestions for donations in other countries let me know. a. The SDS/MSA Support Group The SDS/MSA Support Group now has memorial envelopes available. These envelopes are pre-printed with the address of the Support Group and have a space inside to enter the name of the person the gift is intended to be allocated to. They are tastefully done and are available in any number to survivors. Please notify me if you wish to distribute these envelopes at the memorial services for your loved ones. Don Summers President, The SDS/MSA Support Group email: [log in to unmask] Toll free: 866-737-4999 The Shy-Drager Syndrome/Multiple System Atrophy Support Group is a full non-profit organization approved by the Internal Revenue Service. Donations fund the entire operation of the Group. Services include: - a toll-free number to call for information and physician referral - the maintenance of the group website http://www.shy-drager.com - access to the Shydrager mail list - an annual patient/caregiver/family member meeting with prominent physicians. Please visit the website at www.shy-drager.com Don Summers can be reached at this toll-free number, 866-737-4999 Contributions of any amount may be mailed to: The SDS/MSA Support Group 2004 Howard Lane Austin, Texas 78728 b. Vanderbilt Shy-Drager Research Fund Family members and friends of patients with Multiple System Atrophy or Shy-Drager syndrome have occasionally expressed an interest in making a financial contribution that can be used for research on this condition. Accordingly, we have established a fund for this purpose. All gifts are very much appreciated. Donations for Multiple System Atrophy or Shy-Drager syndrome research can be sent to: Vanderbilt Shy-Drager Research Fund Vanderbilt University Medical Center AA-3228 Medical Center North Nashville, TN 37232-2195 ----------------------------------------- 3. Announcing the European Multiple System Atrophy Study Group - EMSA-SG "Dear Pam, With interest I read you mail about the MSA/SHY-Drager "online" support group. This is just to inform you that there exists a European MSA Study Group, initiated from the Department of Neurology, University of Innsbruck (study coordinator: Prof. Werner Poewe, head of the Department of Neurology, assistant coordinator: Prof. Gregor Wenning). It would be of great help for us if you could inform your members, especially those from Europe, about this initiative. More details you can find on our homepage under http://www.emsa-sg.org In case you need more information please let us know. Kindest regards and many thanks for your help in advance." Ursula Knapp EMSA-SG secretariat Department of Neurology, University of Innsbruck Head: Prof. Werner POEWE, MD A-6020 Innsbruck, Anichstraße 35 Telefon: ++43/512/504-3850 Fax: ++43/512/504-3852 Email: [log in to unmask] [log in to unmask] EMSA-SG Secretariat: [log in to unmask] ----------------------------------------- 4. Boston Globe article on MSA (Contributed by Carol Langer [log in to unmask]) This appeared in the Boston Globe as a side bar in an article about brain pacemakers. Tony Swartz-Lloyd is a member of the Boston area MSA support group. --- The Boston Globe January 1, 2002 "For MSA Patients, Remedies Are Elusive" By: Judy Foreman Despite the promise of deep brain stimulation for a number of neurologic problems, there are some conditions for which it doesn't seem to help, including a baffling - and devastating - condition called multiple system atrophy, or MSA, one of several diseases loosely termed "Parkinson's Plus." MSA, a neurodegenerative disease that is often misdiagnosed as Parkinson's, affects an estimated 25,000 to 100,000 people. "It's like a thief in the night," said Tony Swartz-Lloyd, 65, a longtime vice president at Beth Israel Deaconess Medical Center who is now retired and coping with MSA. "It's a weird and elusive disease. . . . It takes a little piece of you here, a little piece there. You don't realize what's missing at first." MSA, for which there is no long-term effective treatment, often starts, like Parkinson's, with a loss of dopamine-producing cells in the brain. But unlike Parkinson's, dopamine-boosting drugs don't seem to help for more than a couple of years. Early symptoms of MSA include loss of balance and coordination, difficulty speaking, a drop in blood pressure upon standing up but high blood pressure while lying down, stiffness and slowness of movement. Patients often develop other problems, such as impotence and difficulty urinating, that are triggered by degeneration in the autonomic nervous system, which controls involuntary bodily functions. Despite the gloomy prognosis that many MSA patients face - gradual loss of many bodily functions and death within six to eight years - there are some bright spots, notably research suggesting that an underlying problem appears to be abnormal deposits (on brain cells) of a protein called alpha-synuclein. Researchers are also studying neuroprotective drugs to keep brain cells from dying in diseases such as MSA and Parkinson's, and other agents to help new brain cells grow. Copyright (c) 2002 Globe Newspaper Company Record Number: 0201010293 ----------------------------------------- 5. New fact sheet explaining Olivopontocerebellar atrophy (OPCA): Finally they've rewritten this topic to include more up to date information. Note that OPCA can fall under the heading of: 1. MSA - Multiple System Atrophy (sporadic/non-hereditary) or 2. SCA - Spinocerebellar Ataxia (hereditary) See: http://www.emedicine.com/neuro/topic282.htm ----------------------------------------- 6. News from the Center for Neurodegenerative Disease Research. (Contributed by Steve Crawford [log in to unmask]) "Dear Mr. Crawford, We have come a long way since the discovery of MSA and this has been driven by exciting work in the last 4 years on the protein (known as alpha-synuclein) that forms the toxic aggregates in brain cells of MSA patients. These new insights into MSA are prerequisites for identifying targets for novel drug discovery efforts for MSA patients, but this still requires substantial investments in time and resources. However, I am pleased to say Penn and our Center for Neurodegenerative Disease Research (CNDR; with which Dr. Hurtig and his colleagues work very closely) is now a leader in research on this subject, so you should know that many of us feel we have turned an important corner on efforts to develop better therapies for MSA. Please visit our CNDR website at the address below for more information. http://www.uphs.upenn.edu/cndr/ Finally, as an indication of our optimism about moving forward in understanding MSA, I can tell you that we have a grant pending now that will enable experts from across the USA to work together in multidisciplinary studies of MSA and we are hopeful it will be funded in the near future thereby enabling us to ramp our activities further in this area of research." Sincerely, John Q. Trojanowski, M.D., Ph.D. Center for Neurodegenerative Disease Research Division of Anatomic Pathology Department of Pathology and Laboratory Medicine HUP, Maloney 3rd Floor 36th and Spruce Streets Philadelphia, PA 19104-4283 USA Tel: 215-662-6399; Fax: 215-349-5909 E-mail: [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn