|
|
|
|
There is an online support group "mailing list" for MSA at http://groups.yahoo.com/group/shydrager. Although it is called Shy-Drager, it is in fact an MSA chat group. It has 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, at pbower@accesscable.net will be more than happy to assist. You can join the group online and read messages there or subscribe and receive daily emails by sending a blank email to shydrager-subscribe@yahoogroups.com. There is an MSA Chat Room located there also: www.accesswave.ca/~pbower/msachat.htm The current chat schedule is posted. In order to join the chat you will need to download chat software first from: www.aol.ca/aim/index_eng.adp There is also an MSA newsletter available online at: http://groups.yahoo.com/group/msa-news. (Usually updated monthly). You can subscribe online to have it delivered to your inbox or send a blank email to: msa-news-subscribe@yahoogroups.com
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. To read this web site in English, go to http://world.altavista.com and copy and paste http://ams.aramise.free.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.msaweb.co.uk www.msaweb.co.uk/faq.htmThe Sarah Matheson Trust also has a newsletter which is posted at: www.msaweb.co.uk/newsletter.htm. (Usually updated quarterly)
There is an SDS/MSA Support Group in America www.shy-drager.com 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 866-737-4999 or via e-mail at Don.Summers@shy-drager.com. 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. Click on MSA in the left column and you get a nice précis of MSA. (or go straight there by typing in www.wemove.org/msa.html. WE MOVE offers a free information service and anyone can subscribe. There is a good definition of MSA at the National Parkinson Foundation Inc web site. You can access this at www.parkinson.org/atrophy.htm. 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 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 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://groups.yahoo.com/links/shydrager www.emedicine.com/neuro/topic671.htm www.parkinson.org/atrophy.htmwww.neuro.nwu.edu/meded/MOVEMENT/msa.html www.shy-drager.com/Consensus%20Statement.htm www.emedicine.com/neuro/topic282.htm www.ataxia.org/generations/2001summer/gilman.html www.emedicine.com/neuro/topic354.htmRESEARCH: 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 Current research articles on MSA can be found by searching Pubmed at: www.ncbi.nlm.nih.gov/entrez Clinical trials accepting MSA patients can be found by searching: www.clinicaltrials.gov
SIMILAR DISORDERS: 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. For more information on Parkinson-Plus Disorders: www.mayo.edu/fpd/pd-info/parkplus.htm www.parkinson.org/pdquestions.htm www.emedicine.com/neuro/topic596.htm www.parkinsons-information-exchange-network-online.com/archive/091.ht
Disclaimer The information contained
on this Web site is intended as a guide to assist visitors to this site looking
for information on MSA and related issues. It is not a
substitute for diagnosis, prognosis and treatment provided by a qualified
medical practitioner. Some people, particularly those in the early stages
of MSA, and/or their Carers, might find some of my information upsetting.
In addition, this site provides links to other Web sites that contain information that may be of interest to visitors to this site. I recommend people check out these sites, but I can not guarantee the accuracy, completeness or timeliness of information presented at these sites. John Cummings aka the World Wide Wombat Melbourne Australia Click here if you wish to contact me This page was last updated on 30 October 2005. |