Guest guest Posted November 26, 2004 Report Share Posted November 26, 2004 Happy Thanksgiving Folks - I'm announcing the establishment of our group. I would solicit help in finding a name. In the meantime, I thought SCEIG (pronounced SEEG), standing for " SLL and CLL Education and Information Group " . Any better ideas will be readily considered. Although I expect that much of the communication to members will be done via e-mail, I have asked all of you for snail mail addresses and phone numbers as well, just in case. Do not worry, these will be kept strictly confidential. Whenever possible, I will use " blind copy " e-mailing so that everyone does not necessarily see everyone else's e-mail address. I have several times stated the purpose of this effort:: Because SLL/CLL is not nearly as prevalent as other lymphomas, we frequently get very little attention. The object here is to gather voices together, so that we get MORE attention, better sessions at seminars, more seminars, better speakers, better patient advocacy, etc. Dr. Mort in NYC has agreed to be our Medical Advisor. He is an exceptional hematologist, has a lot of influence in the field, and has been the principal driving force behind this. He has stated that if we are sufficiently numerous, and sufficiently " noisy " , he can get us any kind of support or information we would need. Now here is the current problem. Although I have solicited by e-mail, and signed up just about everyone at the recent LRF conference in San Francisco, where they were very helpful with our effort, we are not yet nearly numerous enough. Therefore I am re-posting this on my list and the ACOR list, and urging all of you to join. There is no downside; all we need is your voice and the weight of numbers. The upside is that you will become a better informed patient. Please contact me personally at the above e-mail, let me know who and where you are. (Location is important, as this might enable us in the future to do regional things.) There should be at least several hundred of us in order to make this effort meaningful. Good health, Balan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2004 Report Share Posted November 26, 2004 Great News!!!!!!!!!!Thanks gordon jb50192@... wrote: Happy Thanksgiving Folks - I'm announcing the establishment of our group. I would solicit help in finding a name. In the meantime, I thought SCEIG (pronounced SEEG), standing for " SLL and CLL Education and Information Group " . Any better ideas will be readily considered. Although I expect that much of the communication to members will be done via e-mail, I have asked all of you for snail mail addresses and phone numbers as well, just in case. Do not worry, these will be kept strictly confidential. Whenever possible, I will use " blind copy " e-mailing so that everyone does not necessarily see everyone else's e-mail address. I have several times stated the purpose of this effort:: Because SLL/CLL is not nearly as prevalent as other lymphomas, we frequently get very little attention. The object here is to gather voices together, so that we get MORE attention, better sessions at seminars, more seminars, better speakers, better patient advocacy, etc. Dr. Mort in NYC has agreed to be our Medical Advisor. He is an exceptional hematologist, has a lot of influence in the field, and has been the principal driving force behind this. He has stated that if we are sufficiently numerous, and sufficiently " noisy " , he can get us any kind of support or information we would need. Now here is the current problem. Although I have solicited by e-mail, and signed up just about everyone at the recent LRF conference in San Francisco, where they were very helpful with our effort, we are not yet nearly numerous enough. Therefore I am re-posting this on my list and the ACOR list, and urging all of you to join. There is no downside; all we need is your voice and the weight of numbers. The upside is that you will become a better informed patient. Please contact me personally at the above e-mail, let me know who and where you are. (Location is important, as this might enable us in the future to do regional things.) There should be at least several hundred of us in order to make this effort meaningful. Good health, Balan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2004 Report Share Posted November 26, 2004 Please add me to your list. My email is ebs77x@.... My address and phone # are -3330 Warrensville Center Rd Apt 203, Shaker Hts Ohio 44122, # 216 295 6606. Thanks for all your work. edie At 08:39 AM 11/26/2004, you wrote: >Happy Thanksgiving Folks - > >I'm announcing the establishment of our group. I would solicit help in >finding a name. In the meantime, I thought SCEIG (pronounced SEEG), >standing for > " SLL and CLL Education and Information Group " . Any better ideas will be >readily >considered. > >Although I expect that much of the communication to members will be done via >e-mail, I have asked all of you for snail mail addresses and phone numbers as >well, just in case. Do not worry, these will be kept strictly confidential. >Whenever possible, I will use " blind copy " e-mailing so that everyone does >not >necessarily see everyone else's e-mail address. > >I have several times stated the purpose of this effort:: > >Because SLL/CLL is not nearly as prevalent as other lymphomas, we frequently >get very little attention. The object here is to gather voices together, so >that we get MORE attention, better sessions at seminars, more seminars, >better >speakers, better patient advocacy, etc. > >Dr. Mort in NYC has agreed to be our Medical Advisor. He is an >exceptional hematologist, has a lot of influence in the field, and has >been the >principal driving force behind this. He has stated that if we are >sufficiently >numerous, and sufficiently " noisy " , he can get us any kind of support or >information we would need. > >Now here is the current problem. Although I have solicited by e-mail, and >signed up just about everyone at the recent LRF conference in San Francisco, >where they were very helpful with our effort, we are not yet nearly numerous >enough. Therefore I am re-posting this on my list and the ACOR list, and >urging all >of you to join. There is no downside; all we need is your voice and the >weight of numbers. The upside is that you will become a better informed >patient. > >Please contact me personally at the above e-mail, let me know who and where >you are. (Location is important, as this might enable us in the future to do >regional things.) There should be at least several hundred of us in order to >make this effort meaningful. > >Good health, Balan > > > Quote Link to comment Share on other sites More sharing options...
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