Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 I, for one, resent the fact that Mr. Summers is soliciting donations on this site. Dr. Ray -- Financial Support Dear , As the president of the SDS/MSA Support Group, I would like to recommendthat your financial support beplaced there. Memorial donations make it possible for us to have Patient,Caregiver, Family Member and Physicianmeetings across the country. They also make it possible for us to maintainour website (www.shy-drager.com), provide atoll free phone number () for patients and caregivers to calland receive information on the illness and how tomake the patient as comfortable and functional as possible. This supportalso allows me to travel to severalprofessional meetings with physicians such as the American Academy ofNeurology, The Movement Disorder Conferenceand the American Autonomic Society each year. At these meetings I encouragephysicians to take our brochures into their offices to be available to theirpatients. Because of the SDS/MSA Support Group, knowledge of this illnessis beingspread over the whole country. The support group has a very small budgetand really needs all the financial help that we can get! I sincerely hopethat you too will support us!Best regards,Don SummersPresidentSDS/MSA Support GroupIf 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...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 I, for one, resent the fact that Mr. Summers is soliciting donations on this site. Dr. Ray -- Financial Support Dear , As the president of the SDS/MSA Support Group, I would like to recommendthat your financial support beplaced there. Memorial donations make it possible for us to have Patient,Caregiver, Family Member and Physicianmeetings across the country. They also make it possible for us to maintainour website (www.shy-drager.com), provide atoll free phone number () for patients and caregivers to calland receive information on the illness and how tomake the patient as comfortable and functional as possible. This supportalso allows me to travel to severalprofessional meetings with physicians such as the American Academy ofNeurology, The Movement Disorder Conferenceand the American Autonomic Society each year. At these meetings I encouragephysicians to take our brochures into their offices to be available to theirpatients. Because of the SDS/MSA Support Group, knowledge of this illnessis beingspread over the whole country. The support group has a very small budgetand really needs all the financial help that we can get! I sincerely hopethat you too will support us!Best regards,Don SummersPresidentSDS/MSA Support GroupIf 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...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 I, for one, resent the fact that Mr. Summers is soliciting donations on this site. Dr. Ray -- Financial Support Dear , As the president of the SDS/MSA Support Group, I would like to recommendthat your financial support beplaced there. Memorial donations make it possible for us to have Patient,Caregiver, Family Member and Physicianmeetings across the country. They also make it possible for us to maintainour website (www.shy-drager.com), provide atoll free phone number () for patients and caregivers to calland receive information on the illness and how tomake the patient as comfortable and functional as possible. This supportalso allows me to travel to severalprofessional meetings with physicians such as the American Academy ofNeurology, The Movement Disorder Conferenceand the American Autonomic Society each year. At these meetings I encouragephysicians to take our brochures into their offices to be available to theirpatients. Because of the SDS/MSA Support Group, knowledge of this illnessis beingspread over the whole country. The support group has a very small budgetand really needs all the financial help that we can get! I sincerely hopethat you too will support us!Best regards,Don SummersPresidentSDS/MSA Support GroupIf 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...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Ray, Don't forget that many people on this list found the site due to the National SDS/MSA group toll free telephone number. Note too that when my wife died, I asked that donations be sent to that group. In addition, that group worked with Vanderbilt to set up this list. So was I wrong too? Personally, I feel we need to coordinate efforts with the National to get more attention for MSA. Maybe we need a volunteer coordinator. I will bring this up at the National Meeting in Boston (which is sponsored by the same organization). I have talked to Don before (his wife died of MSA some years ago) and expect to meet him at the meeting in Boston. We are all in this to fight MSA. Let's not start fighting like the PD groups. Take care, Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 I think Don was just responding to my email asking about possible organizations to whom my family and I could donate the money that was contributed in my father's memory. Sorry if I started something. --- Ray fourdiamonds@...> wrote: > I, for one, resent the fact that Mr. Summers is > soliciting donations on this > site. > > Dr. Ray > > -- Financial Support > > Dear , > As the president of the SDS/MSA Support Group, I > would like to recommend > that your financial support be > placed there. Memorial donations make it possible > for us to have Patient, > Caregiver, Family Member and Physician > meetings across the country. They also make it > possible for us to maintain > our website (www.shy-drager.com), provide a > toll free phone number () for patients > and caregivers to call > and receive information on the illness and how to > make the patient as comfortable and functional as > possible. This support > also allows me to travel to several > professional meetings with physicians such as the > American Academy of > Neurology, The Movement Disorder Conference > and the American Autonomic Society each year. At > these meetings I encourage > physicians to take our brochures into their offices > to be available to their > patients. Because of the SDS/MSA Support Group, > knowledge of this illness > is being > spread over the whole country. The support group > has a very small budget > and really needs all the financial help that we can > get! I sincerely hope > that you too will support us! > Best regards, > Don Summers > President > SDS/MSA Support Group > > > 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...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 I think Don was just responding to my email asking about possible organizations to whom my family and I could donate the money that was contributed in my father's memory. Sorry if I started something. --- Ray fourdiamonds@...> wrote: > I, for one, resent the fact that Mr. Summers is > soliciting donations on this > site. > > Dr. Ray > > -- Financial Support > > Dear , > As the president of the SDS/MSA Support Group, I > would like to recommend > that your financial support be > placed there. Memorial donations make it possible > for us to have Patient, > Caregiver, Family Member and Physician > meetings across the country. They also make it > possible for us to maintain > our website (www.shy-drager.com), provide a > toll free phone number () for patients > and caregivers to call > and receive information on the illness and how to > make the patient as comfortable and functional as > possible. This support > also allows me to travel to several > professional meetings with physicians such as the > American Academy of > Neurology, The Movement Disorder Conference > and the American Autonomic Society each year. At > these meetings I encourage > physicians to take our brochures into their offices > to be available to their > patients. Because of the SDS/MSA Support Group, > knowledge of this illness > is being > spread over the whole country. The support group > has a very small budget > and really needs all the financial help that we can > get! I sincerely hope > that you too will support us! > Best regards, > Don Summers > President > SDS/MSA Support Group > > > 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...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 I think Don was just responding to my email asking about possible organizations to whom my family and I could donate the money that was contributed in my father's memory. Sorry if I started something. --- Ray fourdiamonds@...> wrote: > I, for one, resent the fact that Mr. Summers is > soliciting donations on this > site. > > Dr. Ray > > -- Financial Support > > Dear , > As the president of the SDS/MSA Support Group, I > would like to recommend > that your financial support be > placed there. Memorial donations make it possible > for us to have Patient, > Caregiver, Family Member and Physician > meetings across the country. They also make it > possible for us to maintain > our website (www.shy-drager.com), provide a > toll free phone number () for patients > and caregivers to call > and receive information on the illness and how to > make the patient as comfortable and functional as > possible. This support > also allows me to travel to several > professional meetings with physicians such as the > American Academy of > Neurology, The Movement Disorder Conference > and the American Autonomic Society each year. At > these meetings I encourage > physicians to take our brochures into their offices > to be available to their > patients. Because of the SDS/MSA Support Group, > knowledge of this illness > is being > spread over the whole country. The support group > has a very small budget > and really needs all the financial help that we can > get! I sincerely hope > that you too will support us! > Best regards, > Don Summers > President > SDS/MSA Support Group > > > 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...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 , You didn't start anything, you just asked a good question. I know this is a tough time for you and your family, don't let this misunderstanding get you down. I don't think anyone is really upset. Remember we are still family here on the list. I just think some of the newer people don't realize the ties between this list, Vanderbilt University and the SDS/MSA Support Group. That coupled with the outbreak of SPAM on the list recently has many a little perturbed (the SPAM has Pam and me uptight also). I just wanted to let newer members know that Don is a member of the list and was before I came on the list. Vanderbilt University started this list (with the SDS/MSA Support Group) in 1995 and provided the server (actually it still works) until July 2000, when they moved us here to get more services. Pam and I are generally the only ones on the old list and refer people here when they find that one. Hugs to you, Bill Werre -------------------------------------------------------- M Bruner wrote: > I think Don was just responding to my email asking > about possible organizations to whom my family and I > could donate the money that was contributed in my > father's memory. Sorry if I started something. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Dr. Ray: Don Summers was one of the members of this group that was most helpful to me when I first joined. His wife died from MSA, and after her death with the support of the people on this list, he organized the group he was referring to as a charitable organization to help sufferers of MSA. At the time, there were only research organizations specializing in this disease. When a member dies, relatives often ask for suggestions of worthy charities that help sufferers of this disease. I did that when Ken died, and I sent donations to the ones that were suggested including to Don Summers. I am sure he was not trying to do anything in his note but respond to the request. most of us know who he is, and he did not think he had to explain. You may meet him one of these days, and you will find he and his organization are very dedicated. This is a wonderful supportive group of people, and we do not want any Spam, but this letter was not Spam. Love, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Dr. Ray: Don Summers was one of the members of this group that was most helpful to me when I first joined. His wife died from MSA, and after her death with the support of the people on this list, he organized the group he was referring to as a charitable organization to help sufferers of MSA. At the time, there were only research organizations specializing in this disease. When a member dies, relatives often ask for suggestions of worthy charities that help sufferers of this disease. I did that when Ken died, and I sent donations to the ones that were suggested including to Don Summers. I am sure he was not trying to do anything in his note but respond to the request. most of us know who he is, and he did not think he had to explain. You may meet him one of these days, and you will find he and his organization are very dedicated. This is a wonderful supportive group of people, and we do not want any Spam, but this letter was not Spam. Love, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2002 Report Share Posted April 26, 2002 ONE MORE PERSON ON THIS LIST GIVE ME HELL FOR BRINGING UP MY OPINION AND I WILL UNSUBSCRIBE! I DON'T KNOW THIS GUY AND GET SEVERAL EMAILS AND TELEPHONE CALLS EACH WEEK WANTING MONEY I DON'T HAVE. LAY OFF -- Re: Financial Support Ray,Don't forget that many people on this list found the site due to theNational SDS/MSA group toll free telephone number. Note too that whenmy wife died, I asked that donations be sent to that group. Inaddition, that group worked with Vanderbilt to set up this list. So wasI wrong too?Personally, I feel we need to coordinate efforts with the National toget more attention for MSA. Maybe we need a volunteer coordinator. Iwill bring this up at the National Meeting in Boston (which is sponsoredby the same organization). I have talked to Don before (his wife diedof MSA some years ago) and expect to meet him at the meeting in Boston.We are all in this to fight MSA. Let's not start fighting like the PDgroups.Take care, BillIf 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...
Guest guest Posted April 26, 2002 Report Share Posted April 26, 2002 Ray, I didn't mean to give you hell. I was just trying to point out that it is not a profit making deal. This group sponsor's the national conferences and that costs money. We have them convinced to audio tape this conference so all of you can get an audio tape at cost. Many people on the list have requested this. Many of us are working hard to make the National responsive to the needs of the patients and caregivers. The request from Don was in response to 's request for a place to donate for research. We are family here and no one is trying to hurt anyone's feelings. We gossip, joke and goof off as you know, we do fight SPAM. But at the same time we want to build a focus organization to fight for MSA. If I sounded like I jumped on you, I sincerely apologize as that was NOT my intention. I only wanted you to know some of the history. Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
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