Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 Is anyone here also from the Western New York area? I'm still going through the diagnosis part of this whole ordeal but I think it would help the find/start a support group for MSA... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 Hi Amy, I'm pretty sure there are a few in the Buffalo area. They might not be reading the list right now but I can get you connected this weekend. My trusty database to the rescue again! There isn't an active group there right now but there might be enough interest to get one started. Of interest to everyone: On the subject of support groups, June from New Zealand told me the other day in the chat room that she had visited with another MSA family there in Auckland ... so now we have a New Zealand MSA support group! Hugs, Pam Buffalo, New York Is anyone here also from the Western New York area? I'm still going through the diagnosis part of this whole ordeal but I think it would help the find/start a support group for MSA... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 Pam- Thank you, thank you! I did find Diane Hall's name on the list of support groups from the National Ataxia Foundation but she's making referrals to local associations - not actually involved with a support group. Any names you can give me would be great. We can start meeting at my house! -- In shydrager@y..., " Pam Bower " wrote: > Hi Amy, > > I'm pretty sure there are a few in the Buffalo area. They might not be > reading the list right now but I can get you connected this weekend. My > trusty database to the rescue again! There isn't an active group there > right now but there might be enough interest to get one started. > > Of interest to everyone: > On the subject of support groups, June from New Zealand told me the other > day in the chat room that she had visited with another MSA family there in > Auckland ... so now we have a New Zealand MSA support group! > > Hugs, > Pam > > > Buffalo, New York > > > > Is anyone here also from the Western New York area? I'm still going > through the diagnosis part of this whole ordeal but I think it would > help the find/start a support group for MSA... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 Amy, All ataxia patients have many of the same problems as MSA patients. That is why the DC group has openly recruited members with ANY ataxia or autonomic problems. We have members with MSA, POTS, CBGD, PAF and several as yet with no specific diagnoses. At over 30 patients on our contact list (30% with no computer) we do get as many as 13 people at our meetings. This all stated almost three years ago when my wife and I met and Terri Moller in a Park (through this list). We have added people through this list, by doctor contacts, PT/ST contacts, and other support groups. We have no formal business meetings - someone offers a place to meet (the Mollers live very close to the Washington, DC Beltway which is convenient to Baltimore and Washington suburbs, but comes in from 120 miles away in Charlottesville VA and Rose comes in from a great distance in WVA. Note too, I think there are member(s) of the list in Toronto, Canada who might come down also. A house with handcapped access is best. Take care, Bill Werre =============================== anneamy2000 wrote: > Pam- > > Thank you, thank you! > > I did find Diane Hall's name on the list of support groups from the > National Ataxia Foundation but she's making referrals to local > associations - not actually involved with a support group. > > Any names you can give me would be great. We can start meeting at my > house! > > -- In shydrager@y..., " Pam Bower " wrote: > > Hi Amy, > > > > I'm pretty sure there are a few in the Buffalo area. They might not > be > > reading the list right now but I can get you connected this weekend. > My > > trusty database to the rescue again! There isn't an active group > there > > right now but there might be enough interest to get one started. > > > > Of interest to everyone: > > On the subject of support groups, June from New Zealand told me the > other > > day in the chat room that she had visited with another MSA family > there in > > Auckland ... so now we have a New Zealand MSA support group! > > > > Hugs, > > Pam > > > > > > Buffalo, New York > > > > > > > > Is anyone here also from the Western New York area? I'm still going > > through the diagnosis part of this whole ordeal but I think it would > > help the find/start a support group for MSA... > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
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