Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 This is the sort of public exposure we've been hoping for. I hope you'll consider participating. This effort is being organized by relatives of one of our list members, Sophia Dohm from the San Francisco area. Regards, Pam -------------------------- July 17, 2002 Dear Pam Bower, Would it be possible to have this announcement distributed via the Shy-Drager MSA email list? Thank you very much. Jim Likowski & Deb Dohm Rainlight Films mulesear@... __________________________________________________________ ATTENTION: People with MSA and Caregivers / Pam Bower and the Shy-Drager/MSA list RE: PHOTOS and WRITINGS of People with MSA for MSA VIDEO DOCUMENTARY Hello— I am writing on behalf of Rainlight Films to let you know about a video documentary we are producing about Multiple System Atrophy (MSA) -- and to ask your help in creating A MONTAGE SEQUENCE featuring the FACES and COMMENTS OF many PEOPLE WITH MSA. Rainlight Films is an independent, nonprofit endeavor run by Jim Likowski and Deb Dohm. Jim is a documentary filmmaker and has produced several programs shown on public television. We both became aware of the issues of MSA when our sister-in-law, Sophia Dohm was diagnosed in 1996. As you know, having a relatively unknown disorder is an alienating condition -- few people have ever heard of it, there are no specific treatments or medications, research is scanty and a cure seems distant. In the film we want to document the human element: the emotional demands on MSA sufferers, their families, and caregivers, and the challenge of trying to cope. Included also will be information on the medical aspects of the disease. I am writing to tell you about the film, and secondly because we would like to create a sequence featuring FACES and brief SKETCHES OR ANECDOTES about people who have MSA. Therefore, if you are willing to VOLUNTEER and share your knowledge and experience (Deadline: August 31), we are seeking 1) your STILL PHOTOGRAPH (or home video) and 2) a BRIEF SYNOPSIS of your experience with the disease, including what TOOLS and METHODS of coping and caregiving have served you most effectively -- We would be very interested in hearing what your biggest challenge or learning experience has been; the one most important thing you would want to say to someone who has been newly diagnosed with MSA; and general advice you would offer to people with MSA and to their caregivers. The film will be shown on public and cable television and worldwide on the Internet. Our purpose in making the film is so people newly diagnosed will not feel so alone and so those that have had MSA longer will know their story is being told. And, to increase public awareness. The more people that know about MSA the sooner a cure can be found. Research funding unfortunately is dependent upon broad public recognition. We are beginning to edit the film and plan to complete it by the end of the year. PHOTOS and WRITINGS need to be in to us by AUGUST 31 to be considered. Let me reiterate that the written piece can be short, as long as your most important feelings, advice, and comments are emphasized. We will return all photographs and videos; or you can email digital photos, if you like. We appreciate your help by letting your stories and faces be known! Thank you. Sincerely, Deb Dohm and Jim Likowski Rainlight Films P.O. Box 410 Coloma, CA 95613 Email: mulesear@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Dear Jim and Deb, I am very interested in your project. and I will try to give you information you need. Please see the attachment for a photo. Will you need a release signed for use of testimonies/use of photos? 1) your STILL PHOTOGRAPH (or home video) and SEE ATTACHMENT2) a BRIEF SYNOPSIS of your experience with the disease, including what TOOLS and METHODS of coping and caregiving have served you most effectively I WAS DIAGNOSED IN 2000 BY A NEUROLOGIST HERE IN LAS VEGAS NEVADA. MY DISEASE HAS GONE FROM BEING A COMPLELY INDEPENDENT INDIVIDUAL TO ONE THAT MUST RELY ON SOMEONE TO TAKE ME WHERE EVER I WANT TO GO, DO OR ANYTHING. MY CONGITION ABILITIES HAS REDUCED TO WRTINING EVERYTHING DOWN IF I WANT TO REMEMBER IT. ( I USED TO HAVE A PHOTOGRAPHIC MEMORY) I was a Safety Engineer with a Ph.D. in Occupational Safety and Health Engineering from a prestigious university back east. As for tools, I am on several medications, Sinemet, Comptan, Parlodel, Darvocet, Zocor, and others. As for coping, I still have a very hard time doing so. Things i believe I could do, I now find out I simply cannot and get very frustrated trying. Thank God for my church, and my wife, without either of those, I would not be able to keep going. The Shy-Drager support group is a GIANT help. Whatever questions, frustrations, emotions, sorrows, glad tidings, etc., can be announced to the group. They are better than support, I feel they are family that I can talk to at anytime, anywhere. We would be very interested in hearing what your biggest challenge or learning experience has been; the one most important thing you would want to say to someone who has been newly diagnosed with MSA; and general advice you would offer to people with MSA and to their caregivers. My biggest challenge: accepting the inevidible. Knowing that the disease wil beat me, I can't beat the disease. But I sure don't have to lay down and take it, I can fight back by learning about symptoms, treatments, and advances in research. Education is power, that has salways been my belief. should you have a question, ASK! Ask your doctor, your neurologist, physical therapist, church leader, and support group. Without someone to speak to , you can and will get yoursself into a very small place. Caregivers and patients both have avenues to get information. It is very important to use them. I hope I have answered your questions. Please let me know if you need any further information or if you have more questions. I would be pleased to help in any way I can. Dr. H. Ray , CSM, CSP, CPEA, Ph.D., ISSA. -- IMPORTANT - MSA Video This is the sort of public exposure we've been hoping for. I hope you'll consider participating. This effort is being organized by relatives of one of our list members, Sophia Dohm from the San Francisco area.Regards,Pam--------------------------July 17, 2002 Dear Pam Bower, Would it be possible to have this announcement distributed via the Shy-Drager MSA email list?Thank you very much.Jim Likowski & Deb DohmRainlight Filmsmulesear@...__________________________________________________________ATTENTION: People with MSA and Caregivers / Pam Bower and the Shy-Drager/MSA list RE: PHOTOS and WRITINGS of People with MSA for MSA VIDEO DOCUMENTARYHello—I am writing on behalf of Rainlight Films to let you know about a video documentary we are producing about Multiple System Atrophy (MSA) -- and to ask your help in creating A MONTAGE SEQUENCE featuring the FACES and COMMENTS OF many PEOPLE WITH MSA. Rainlight Films is an independent, nonprofit endeavor run by Jim Likowski and Deb Dohm. Jim is a documentary filmmaker and has produced several programs shown on public television. We both became aware of the issues of MSA when our sister-in-law, Sophia Dohm was diagnosed in 1996. As you know, having a relatively unknown disorder is an alienating condition -- few people have ever heard of it, there are no specific treatments or medications, research is scanty and a cure seems distant. In the film we want to document the human element: the emotional demands on MSA sufferers, their families, and caregivers, and the challenge of trying to cope. Included also will be information on the medical aspects of the disease.I am writing to tell you about the film, and secondly because we would like to create a sequence featuring FACES and brief SKETCHES OR ANECDOTES about people who have MSA. Therefore, if you are willing to VOLUNTEER and share your knowledge and experience (Deadline: August 31), we are seeking 1) your STILL PHOTOGRAPH (or home video) and 2) a BRIEF SYNOPSIS of your experience with the disease, including what TOOLS and METHODS of coping and caregiving have served you most effectively --We would be very interested in hearing what your biggest challenge or learning experience has been; the one most important thing you would want to say to someone who has been newly diagnosed with MSA; and general advice you would offer to people with MSA and to their caregivers.The film will be shown on public and cable television and worldwide on the Internet. Our purpose in making the film is so people newly diagnosed will not feel so alone and so those that have had MSA longer will know their story is being told. And, to increase public awareness. The more people that know about MSA the sooner a cure can be found. Research funding unfortunately is dependent upon broad public recognition. We are beginning to edit the film and plan to complete it by the end of the year. PHOTOS and WRITINGS need to be in to us by AUGUST 31 to be considered. Let me reiterate that the written piece can be short, as long as your most important feelings, advice, and comments are emphasized.We will return all photographs and videos; or you can email digital photos, if you like.We appreciate your help by letting your stories and faces be known! Thank you. Sincerely, Deb Dohm and Jim Likowski Rainlight Films P.O. Box 410 Coloma, CA 95613 Email: mulesear@...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 July 17, 2002 Report Share Posted July 17, 2002 Hi Dr. Ray, Thanks for sharing your submission, I hope others will follow your great example. Did you also send this to Jim & Deb directly? I don't think they are subscribed to the list. Their email is mulesear@... Take care, Pam IMPORTANT - MSA Video This is the sort of public exposure we've been hoping for. I hope you'll consider participating. This effort is being organized by relatives of one of our list members, Sophia Dohm from the San Francisco area. Regards, Pam -------------------------- July 17, 2002 Dear Pam Bower, Would it be possible to have this announcement distributed via the Shy-Drager MSA email list? Thank you very much. Jim Likowski & Deb Dohm Rainlight Films mulesear@... __________________________________________________________ ATTENTION: People with MSA and Caregivers / Pam Bower and the Shy-Drager/MSA list RE: PHOTOS and WRITINGS of People with MSA for MSA VIDEO DOCUMENTARY Hello- I am writing on behalf of Rainlight Films to let you know about a video documentary we are producing about Multiple System Atrophy (MSA) -- and to ask your help in creating A MONTAGE SEQUENCE featuring the FACES and COMMENTS OF many PEOPLE WITH MSA. Rainlight Films is an independent, nonprofit endeavor run by Jim Likowski and Deb Dohm. Jim is a documentary filmmaker and has produced several programs shown on public television. We both became aware of the issues of MSA when our sister-in-law, Sophia Dohm was diagnosed in 1996. As you know, having a relatively unknown disorder is an alienating condition -- few people have ever heard of it, there are no specific treatments or medications, research is scanty and a cure seems distant. In the film we want to document the human element: the emotional demands on MSA sufferers, their families, and caregivers, and the challenge of trying to cope. Included also will be information on the medical aspects of the disease. I am writing to tell you about the film, and secondly because we would like to create a sequence featuring FACES and brief SKETCHES OR ANECDOTES about people who have MSA. Therefore, if you are willing to VOLUNTEER and share your knowledge and experience (Deadline: August 31), we are seeking 1) your STILL PHOTOGRAPH (or home video) and 2) a BRIEF SYNOPSIS of your experience with the disease, including what TOOLS and METHODS of coping and caregiving have served you most effectively -- We would be very interested in hearing what your biggest challenge or learning experience has been; the one most important thing you would want to say to someone who has been newly diagnosed with MSA; and general advice you would offer to people with MSA and to their caregivers. The film will be shown on public and cable television and worldwide on the Internet. Our purpose in making the film is so people newly diagnosed will not feel so alone and so those that have had MSA longer will know their story is being told. And, to increase public awareness. The more people that know about MSA the sooner a cure can be found. Research funding unfortunately is dependent upon broad public recognition. We are beginning to edit the film and plan to complete it by the end of the year. PHOTOS and WRITINGS need to be in to us by AUGUST 31 to be considered. Let me reiterate that the written piece can be short, as long as your most important feelings, advice, and comments are emphasized. We will return all photographs and videos; or you can email digital photos, if you like. We appreciate your help by letting your stories and faces be known! Thank you. Sincerely, Deb Dohm and Jim Likowski Rainlight Films P.O. Box 410 Coloma, CA 95613 Email: mulesear@... 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 July 24, 2002 Report Share Posted July 24, 2002 Hi all, If a couple of you were expecting replies from me (Barb Selleck is one) something is wrong with my email program and it is not sending out everthing I try to send. In addition, it is losing my emails that I am replying to, so write again if I do not answer you within a day or so. After two minutes of composition it seems to send my email into never-never land, along with the one to which I am replying. Lost at least three already today. P.S. I will be on the Chat early this evening as I have to go to my daughters birthday party at 8 PM. Take care, Bill Werre > > > Date: 2002/07/17 Wed PM 01:55:01 CDT > To: shydrager > Subject: IMPORTANT - MSA Video > > This is the sort of public exposure we've been hoping for. I hope > you'll consider participating. This effort is being organized by > relatives of one of our list members, Sophia Dohm from the San > Francisco area. > > Regards, > Pam > > -------------------------- > > July 17, 2002 > > Dear Pam Bower, > > Would it be possible to have this announcement distributed via the > Shy-Drager MSA email list? > > Thank you very much. > > Jim Likowski & Deb Dohm > > Rainlight Films > > mulesear@... > > __________________________________________________________ > > > ATTENTION: People with MSA and Caregivers / > > Pam Bower and the Shy-Drager/MSA list > > > RE: PHOTOS and WRITINGS of People with MSA > > for MSA VIDEO DOCUMENTARY > > Hello? > > I am writing on behalf of Rainlight Films to let you know about a > video documentary we are producing about Multiple System Atrophy > (MSA) -- and to ask your help in creating A MONTAGE SEQUENCE > featuring the FACES and COMMENTS OF many PEOPLE WITH MSA. > > Rainlight Films is an independent, nonprofit endeavor run by Jim > Likowski and Deb Dohm. Jim is a documentary filmmaker and has > produced several programs shown on public television. We both became > aware of the issues of MSA when our sister-in-law, Sophia Dohm was > diagnosed in 1996. > > As you know, having a relatively unknown disorder is an alienating > condition -- few people have ever heard of it, there are no specific > treatments or medications, research is scanty and a cure seems > distant. In the film we want to document the human element: the > emotional demands on MSA sufferers, their families, and caregivers, > and the challenge of trying to cope. Included also will be > information on the medical aspects of the disease. > > I am writing to tell you about the film, and secondly because we > would like to create a sequence featuring FACES and brief SKETCHES OR > ANECDOTES about people who have MSA. > > Therefore, if you are willing to VOLUNTEER and share your knowledge > and experience (Deadline: August 31), we are seeking > > 1) your STILL PHOTOGRAPH (or home video) and > > 2) a BRIEF SYNOPSIS of your experience with the disease, including > what TOOLS and METHODS of coping and caregiving have served you most > effectively -- > > We would be very interested in hearing what your biggest challenge or > learning experience has been; the one most important thing you would > want to say to someone who has been newly diagnosed with MSA; and > general advice you would offer to people with MSA and to their > caregivers. > > The film will be shown on public and cable television and worldwide > on the Internet. Our purpose in making the film is so people newly > diagnosed will not feel so alone and so those that have had MSA > longer will know their story is being told. And, to increase public > awareness. The more people that know about MSA the sooner a cure can > be found. Research funding unfortunately is dependent upon broad > public recognition. > > We are beginning to edit the film and plan to complete it by the end > of the year. PHOTOS and WRITINGS need to be in to us by AUGUST 31 to > be considered. Let me reiterate that the written piece can be short, > as long as your most important feelings, advice, and comments are > emphasized. > > We will return all photographs and videos; or you can email digital > photos, if you like. > > We appreciate your help by letting your stories and faces be known! > Thank you. > > Sincerely, > > Deb Dohm and Jim Likowski > > Rainlight Films > > P.O. Box 410 > > Coloma, CA 95613 > > > > Email: mulesear@... > > > > 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 July 24, 2002 Report Share Posted July 24, 2002 Bill, your note has come through the list, so I will not worry about a personal one. Have fun at the party. Barb -- " The greater part of our happiness or misery depends on our dispositions, and not our circumstances. " --Martha Washington Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 Just curious, did anyone else submit anything? Rose -------------------------- July 17, 2002 Dear Pam Bower, Would it be possible to have this announcement distributed via the Shy-Drager MSA email list? Thank you very much. Jim Likowski & Deb Dohm Rainlight Films mulesear@... __________________________________________________________ ATTENTION: People with MSA and Caregivers / Pam Bower and the Shy-Drager/MSA list RE: PHOTOS and WRITINGS of People with MSA for MSA VIDEO DOCUMENTARY Hello— I am writing on behalf of Rainlight Films to let you know about a video documentary we are producing about Multiple System Atrophy (MSA) -- and to ask your help in creating A MONTAGE SEQUENCE featuring the FACES and COMMENTS OF many PEOPLE WITH MSA. Rainlight Films is an independent, nonprofit endeavor run by Jim Likowski and Deb Dohm. Jim is a documentary filmmaker and has produced several programs shown on public television. We both became aware of the issues of MSA when our sister-in-law, Sophia Dohm was diagnosed in 1996. As you know, having a relatively unknown disorder is an alienating condition -- few people have ever heard of it, there are no specific treatments or medications, research is scanty and a cure seems distant. In the film we want to document the human element: the emotional demands on MSA sufferers, their families, and caregivers, and the challenge of trying to cope. Included also will be information on the medical aspects of the disease. I am writing to tell you about the film, and secondly because we would like to create a sequence featuring FACES and brief SKETCHES OR ANECDOTES about people who have MSA. Therefore, if you are willing to VOLUNTEER and share your knowledge and experience (Deadline: August 31), we are seeking 1) your STILL PHOTOGRAPH (or home video) and 2) a BRIEF SYNOPSIS of your experience with the disease, including what TOOLS and METHODS of coping and caregiving have served you most effectively -- We would be very interested in hearing what your biggest challenge or learning experience has been; the one most important thing you would want to say to someone who has been newly diagnosed with MSA; and general advice you would offer to people with MSA and to their caregivers. The film will be shown on public and cable television and worldwide on the Internet. Our purpose in making the film is so people newly diagnosed will not feel so alone and so those that have had MSA longer will know their story is being told. And, to increase public awareness. The more people that know about MSA the sooner a cure can be found. Research funding unfortunately is dependent upon broad public recognition. We are beginning to edit the film and plan to complete it by the end of the year. PHOTOS and WRITINGS need to be in to us by AUGUST 31 to be considered. Let me reiterate that the written piece can be short, as long as your most important feelings, advice, and comments are emphasized. We will return all photographs and videos; or you can email digital photos, if you like. We appreciate your help by letting your stories and faces be known! Thank you. Sincerely, Deb Dohm and Jim Likowski Rainlight Films P.O. Box 410 Coloma, CA 95613 Email: mulesear@... 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 September 5, 2002 Report Share Posted September 5, 2002 My husband and I sent pictures and notes specific to their questions plus a sorta history of Speedy's illness and events that have transpired. Marilyn in TN > > Reply-To: shydrager > Date: Wed, 04 Sep 2002 15:16:18 -0400 > To: shydrager > Subject: Re: IMPORTANT - MSA Video > > > Just curious, did anyone else submit anything? > Rose > > -------------------------- > > July 17, 2002 > > Dear Pam Bower, > > Would it be possible to have this announcement distributed via the > Shy-Drager MSA email list? > > Thank you very much. > > Jim Likowski & Deb Dohm > > Rainlight Films > > mulesear@... > > __________________________________________________________ > > > ATTENTION: People with MSA and Caregivers / > > Pam Bower and the Shy-Drager/MSA list > > > RE: PHOTOS and WRITINGS of People with MSA > > for MSA VIDEO DOCUMENTARY > > Hello— > > I am writing on behalf of Rainlight Films to let you know about a > video documentary we are producing about Multiple System Atrophy > (MSA) -- and to ask your help in creating A MONTAGE SEQUENCE > featuring the FACES and COMMENTS OF many PEOPLE WITH MSA. > > Rainlight Films is an independent, nonprofit endeavor run by Jim > Likowski and Deb Dohm. Jim is a documentary filmmaker and has > produced several programs shown on public television. We both became > aware of the issues of MSA when our sister-in-law, Sophia Dohm was > diagnosed in 1996. > > As you know, having a relatively unknown disorder is an alienating > condition -- few people have ever heard of it, there are no specific > treatments or medications, research is scanty and a cure seems > distant. In the film we want to document the human element: the > emotional demands on MSA sufferers, their families, and caregivers, > and the challenge of trying to cope. Included also will be > information on the medical aspects of the disease. > > I am writing to tell you about the film, and secondly because we > would like to create a sequence featuring FACES and brief SKETCHES OR > ANECDOTES about people who have MSA. > > Therefore, if you are willing to VOLUNTEER and share your knowledge > and experience (Deadline: August 31), we are seeking > > 1) your STILL PHOTOGRAPH (or home video) and > > 2) a BRIEF SYNOPSIS of your experience with the disease, including > what TOOLS and METHODS of coping and caregiving have served you most > effectively -- > > We would be very interested in hearing what your biggest challenge or > learning experience has been; the one most important thing you would > want to say to someone who has been newly diagnosed with MSA; and > general advice you would offer to people with MSA and to their > caregivers. > > The film will be shown on public and cable television and worldwide > on the Internet. Our purpose in making the film is so people newly > diagnosed will not feel so alone and so those that have had MSA > longer will know their story is being told. And, to increase public > awareness. The more people that know about MSA the sooner a cure can > be found. Research funding unfortunately is dependent upon broad > public recognition. > > We are beginning to edit the film and plan to complete it by the end > of the year. PHOTOS and WRITINGS need to be in to us by AUGUST 31 to > be considered. Let me reiterate that the written piece can be short, > as long as your most important feelings, advice, and comments are > emphasized. > > We will return all photographs and videos; or you can email digital > photos, if you like. > > We appreciate your help by letting your stories and faces be known! > Thank you. > > Sincerely, > > Deb Dohm and Jim Likowski > > Rainlight Films > > P.O. Box 410 > > Coloma, CA 95613 > > > > Email: mulesear@... > > > > 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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