There is a world wide MSA support group based in the USA.
The SDS/MSA Support Group is a National 501 (c) 3 charity focused solely on Multiple System Atrophy.
The SDS/MSA Support Group was founded in 1989 by Dorothy Trainer-Kingsbury whose husband suffered from Multiple System Atrophy and by Dr. David Robertson of Vanderbilt University Medical Center. The initial goal of the group was to provide a forum for patients and their caregivers to interact with others dealing with the same horrible rare disease. Now a 501 (c) 3 charity the SDS/MSA Support Group has grown to be a “Circle of Hope ” to Educate , Support & Fund Research”.
The SDS/MSA Support Group designates a minimum of 25% and as much as 75% of each donation received for research. The other portion of the donations received are used to fund education, core patient support activities, such as our annual patient/caregiver conference , the toll free support line , distribution of DVD’s and printed brochures & our basic expenses. Their goal is to increase both the number of donors and the total dollar amount collected each year so that more money can be given towards research in MSA. After expenses, the remaining portion of all donations are maintained in an account designated to promote and support research and education in this field.
There is also an online support group “mailing list” for MSA at http://groups.yahoo.com/group/shydrager (http://groups NULL.yahoo NULL.com/group/shydrager) . Although it is called Shy-Drager, it is in fact an MSA chat group. As at 2004, it had over 800 members from all over the world, but mostly in America. The members are people with MSA, Carers of people with MSA and former Carers. A lot of the information is general discussion about this, that and everything, but the knowledge level of some of the members is better than many doctors, and much of the advice that they give is very worthwhile. I feel that many doctors could learn from reading the key information posted at this site. Joining the group is self explanatory, but if you have any problems, I am sure that the moderator, Pam Bower (pbower null@null accesscable NULL.net), will be more than happy to assist. Just click on Pam’s name to open an email.
You can join the group online and read messages there or subscribe and receive daily emails by sending a blank email to join shydrager (shydrager-subscribe null@null yahoogroups NULL.com). There is also an MSA Chat Room located there at: www.accesswave.ca/~pbower/msachat.htm (http://www NULL.accesswave NULL.ca/~pbower/msachat NULL.htm)
The current chat schedule is posted. In order to join the chat you will need to have Instant Messenger running. Instructions can be found on the Chat Room web page.
There is also an MSA newsletter available online at: http://groups.yahoo.com/group/msa-news (http://groups NULL.yahoo NULL.com/group/msa-news) (Usually updated monthly). You can subscribe to have it delivered to your email Inbox.
Pam Bower also has an MSA awareness web site at www.msaawareness.org (http://www NULL.msaawareness NULL.org) that displays links to other MSA sites along with the Facebook pages for members from different regions to find each other, making it possible for people to find others who live nearby. It offers a facility for people to enter their name and city to arrange to have meetings together. Also there is a document there that someone can add a doctor to that they are seeing.
A.R.A.M.I.S.E – Association for Research on MSA Information – Support in Europe. This is a European web site in French moderated by Alberte Bonnet and Jean-Claude Michel. The site is at http://ams.aramise.free.fr (http://ams NULL.aramise NULL.free NULL.fr/). To read this web site in English, go to http://world.altavista.com (http://world NULL.altavista NULL.com/) and copy and paste http://ams.aramise.free.fr (http://ams NULL.aramise NULL.free NULL.fr/) into the box beside “Translate a Web page” and select “Translate from French to English”.
The Sarah Matheson Trust for Multiple System Atrophy in the UK
www.msatrust.org.uk/understanding-msa/ (http://www NULL.msatrust NULL.org NULL.uk/understanding-msa/)
There is an SDS/MSA Support Group in America at www.shy-drager.org (http://www NULL.shy-drager NULL.org/)which is very pro-active. It is a Non Profit corporation devoted to reaching and assisting the patients, caregivers, family Members and physicians who are dealing with Shy-Drager Syndrome (one of the three forms of MSA). Their mission is to educate and support those people by establishing a never-ending circle of information among all involved. This has become known as the “Circle of Hope”! They can be contacted at the toll free number in the USA – 866-737-5999 or via e-mail to Vera James (vjames null@null shy-drager NULL.org). (Don NULL.Summers null@null shy-drager NULL.com). Just click on Vera’s name to open an email. Note that a list of US local area support groups for MSA can be found at this site.
Another good site to access is WE MOVE (Worldwide Education and Awareness for Movement Disorders) at www.wemove.org (http://www NULL.wemove NULL.org/). Click on Multiple System Atrophy in the left column and you get a nice précis of MSA. (or go straight there by typing in www.wemove.org/msa/ (http://www NULL.wemove NULL.org/msa/) . WE MOVE offers a free information service and anyone can subscribe.
The National Parkinson Foundation Inc web site may be worth a visit. You can access this at www.parkinson.org/ (http://www NULL.parkinson NULL.org/).
For those wanting information on the various drugs used to treat MSA, The P-I-E-N-O Parkinsn’s List Drug Database Index can be found at www.parkinsons-information-exchange-network-online.com/drugdb/drugdb.html (http://www NULL.parkinsons-information-exchange-network-online NULL.com/drugdb/drugdb NULL.html)
For Australians – another site worth looking at is BrainLink Services – a Victorian based service that is dedicated to improving the quality of life of people affected by acquired disorders of the brain, by providing support to their families and carers.
BrainLink’s first priority is to respond to the immediate needs of the families and friends of those who are living with an acquired brain disorder. Some of these conditions include stroke, head injuries, brain tumour and progressive neurological diseases such as Multiple Sclerosis, Parkinson’s disease, Muscular Dystrophy, Motor Neurone disease and Huntington’s disease.
The services BrainLink offer include:
• A first point of call for families at onset of diagnosis;
• Education support programs for carers and families;
• Innovative and flexible respite opportunities;
• Specialised case management for individuals with severe brain disorders;
• Comprehensive information and resources;
• A referral service to assist the community in navigating the disability service sector.
BrainLink can be found at www.brainlink.org.au (http://www NULL.brainlink NULL.org NULL.au)
Some other sites with information on MSA:
The National Ataxia Foundation in the US (They recognize MSA as a form of sporadic ataxia) http://www.ataxia.org (http://www NULL.ataxia NULL.org)
The National Dysautonomia Research Foundation in the US (They recognize MSA as a dysautonomia – disorder of the autonomic nervous system). http://www.ndrf.org (http://www NULL.ndrf NULL.org)
http://groups.yahoo.com/links/shydrager (http://groups NULL.yahoo NULL.com/links/shydrager)
www.med.umich.edu/neurology/ (http://www NULL.med NULL.umich NULL.edu/neurology/)
There are now two major groups of researchers in the world dedicated to studying MSA. The North American Multiple System Atrophy Study Group(NAMSA-SG) and the European Multiple System Atrophy Study Group (EMSA-SG) see www.emsa-sg.org (http://www NULL.emsa-sg NULL.org)Current research articles on MSA can be found by searching Pubmed at:www.ncbi.nlm.nih.gov/entrez (http://www NULL.ncbi NULL.nlm NULL.nih NULL.gov/entrez)Clinical trials accepting MSA patients can be found by searching: www.clinicaltrials.gov (http://www NULL.clinicaltrials NULL.gov)
Various Parkinson Disease Societies and Foundations worldwide recognize MSA as a “Parkinson-Plus” Disorder. Many people with MSA are first diagnosed with Parkinson’s Disease(PD) or with another of the Parkinson-Plus(PD+) disorders which all have similar symptoms as MSA. Parkinson-Plus disorders include Progressive Supranuclear Palsy(PSP), Corticobasal Ganglionic Degeneration(CBDG) and Lewy Body Dementia(LBD). Do check out support groups for PD and PD+ disorders as well as they also usually welcome people with MSA.
If you would like to leave a comment, click here (http://www NULL.surfcoastwombat NULL.com/looking-back/)to go to the Comments page.