Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 I can't offer any more information, but this does bring up a good issue--someone should be an archivist or historian, or whatever you want to call the position, for the evolution of the SPF. Dolores P.S. My virus problem has been resolved, so I am back in "the swim". HELP PLEASE I need some help, especially from the "older" (pre-Web info) members. I've been getting requests for information about PLS from various sources. I've provided information the best I can but then I realized that I'd like more information of a more "historical" nature. I was contacted by a writer, who had been referred by NORD, wanting information about PLS and what she really wanted was a copy of our booklet (don't we all!) She is going to write an article on rare diseases....since I don't want to misquote her, here are parts of her letter......... > I am writing an article on rare diseases and PLS. I am primarily interested in the research that is being done on PLS. .... said that your organization is publishing a booklet to be distributed to physicians to aid them in earlier and quicker diagnosis of the disease. Would it be possible to get a copy of this booklet? I would appreciate any information you could give me concerning the disease, its treatment, and the number of reported cases in the U.S. Any information that I use in my article will be given citation to your organization, and I will send you a copy when it is published. My interest in PLS is not just a professional one. My brother was diagnosed with the disease three years ago. It is astounding at the lack of knowledge out there about the disease. .... My goal is to not wait until a celebrity comes down with the disease, but rather get the word out. My brother is 57 years old and wheelchair-bound with no hope that any research is underway. Thank you for your help and your ear.> I was thrilled to receive her letter and told her that we needed all the help we could get on PLS Awareness. I informed her that, we too, didn't want to wait for a celebrity to come down with PLS and that we were not waiting. I told her all that we had done in the area of fund raising for PLS research and PLS awareness. I "unofficially" told her that research grants were in the process of being awarded to two researchers for PLS research (this still doesn't mean I'm "allowed" to announce it to the group--it's really much more complicated than I thought. We're really not being ignored.) I also told her that she and her brother should not give up hope since research is being done on our behalf. Then I got to thinking that I'd like to know exactly how we got started and get it all down in writing in a time-line fashion, so that when I'm asked, I can just send an Information Sheet. I have provided the UCSF ALS CLINIC with an information sheet, listing our websites, publications, etc., and have received contacts from 3 people with PLS since I gave them the information. This is something that we can all do but it would be nice if we had a professional-looking Information Sheet to provide. (We're working on that too.--but now I'm off my original subject.) My first knowledge, about PLS research, came from an article written about Levy in our local newspaper (San Mercury News) in December 1998. We contacted L. and found out how he had been researching PLS since his 1977 diagnosis. I don't know how he received information on people who were being diagnosed with PLS, but I always assumed it was his diligent research contacting physicians and having the PLS Newsletter available with physicians and in institutions like Stanford and Mayo Clinic. I do recall at one time a member said they received information on the PLS NEWSLETTER while at the Mayo Clinic. They then contacted L. and he sent a questionnaire to them and then began gathering data. His latest Newsletter listed a total circulation of 1,007 and of that 748 were PLS People circulation. Before that time, we were never able to find any information on PLS on the Web and we had searched diligently. THEN, one day, there was Reyerse's website and I was thrilled. I think, if I remember correctly, it was through that site that I was able to join the "support group" as I call it. For a while, we had PLS-FRIENDS and PLS-PALS but because of the duplication, dropped PALS because Mark had started PLS Friends earlier in 1999. Joe Alberstadt established SYNAPSE in June 1997. He published it monthly until he convinced Mark, after being the editor for 2 years, to take over as editor. I don't know where Joe got his information about people who had PLS. I remember someone telling me that Joe had contacted them, out of the blue, and she was thrilled. That's one gap I'd like to be able to fill in -- where did Joe get his "mailing list". He also did a survey and always encouraged people with PLS to meet. He is given much praise for bringing people together. In fact, so much, that the CT CONNECTION (October 2000) was dedicated in his honor. PLS get togethers are now, almost, a common occurrence. (Spring Fling, 2001, 2002 and scheduled for 2003) as well as locals just getting together for lunches (or pasta parties). In 2000, Mark Weber contacted NORD and launched a fundraising initiative for PLS research. We needed $35,000 in order for NORD to send out Requests for Proposals for research. The challenge than began and soon we had reached, and exceeded, our fundraising goal. I'm not sure when Thomson came along with all her fund raising ideas and her PLS Awareness website. I'm looking for that date too. (I'm guessing 2000.) I feel we are blessed with an abundant amount of information and willingness of our PLS community to fight the fight. Of course, the latest being the formation of the SPF (Spastic Paraplegia Foundation) bringing together HSP and PLS for our mutual good of these similar rare diseases. http://www.sp-foundation.org/ I hope you don't think I'm just rambling. I'm really trying to gather information. Would you please take a minute and help me fill in the gaps, or offer other information of a historical nature that you think would be useful. How did you first learn of PLS Friends and the websites, etc. Please help me, or correct me, because, I really think, it's for all of us. Thanks, Gentner 1977 - Levy diagnosed and began PLS research 1985 (?) - Levy published PLS NEWSLETTER 1997 - Joe Alberstadt published SYNAPSE 1998 (?) - Reyerse created PLS website 1999 - Mark Weber launched PLS-Friends e-mail list 2000 - Mark Weber initiated fundraising initiative with NORD for PLS research 2001 - Reached fundraising goal for PLS Research 2002 - Research grants awarded Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Dolores, Glad to hear that you're swimming again. Last night, as things keep coming to me, I remembered that I hadn't listed your (Dolores' CT support group) in the list. I don't feel particularly qualified (or the inclination) to be the historian but, you're right, it should be done. Any takers? Quote Link to comment Share on other sites More sharing options...
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