==================================================================== == -- ALS INTEREST GROUP -- == == ALS DIGEST (Number 11, 14 JAN 1993) == == To subscribe, unsubscribe, or to contribute notes, please == == send an e-mail message to: bro@huey.met.fsu.edu (Bob Broedel) == ==================================================================== > >------------------------------------------------------------ >Date: Wed, 13 Jan 93 13:27:15 PST >To : BROEDEL@FSU.BITNET >From: "R. D. HESS" >------------------------------------------------------------ >Dear Bob, > > Nancy Rumsey, of the ALS Center in San Francisco, sent me a >fax of your message to her about setting up a bulletin board >or other resource for people with ALS or who have friends with >ALS. I think it is a great idea. I got a bulbar form of ALS >two years ago, a couple of years after retiring from Stanford >(pyschologist in School of Education, doing research on cultural >influences on school achievement, including comparisons of >Japanese and U.S. kids). It was not easy to get good information; >local doctors did not know much about. The Center in S.F. was >very helpful. So I appreciate the need for an exchange. >I am in touch with two groups that are relevant, in addition >to the ALS Center in S.F. and the national office in south Calif. >One is a computer network of seniors called, SeniorNet. We >have a SIG on their bulletin board under a file called Health, >or some such title (I can get more precise info if you would >like it). The other is a newsletter of the PLS (primary lateral >sclerosis) group in the S.F. Bay area. Their membership is >not large but a newsletter goes out to membership from time to >time and I am told it included some neurologists. They might >offer some expert information in response to questions. >The national office also puts out a newsletter. Couple of >months ago I saw an inquiry about electronic mail but did >not respond. The newsletter, called LINK, would probably be >willing to do a story on it. They printed a little story I >wrote about things having to do with drooling and wearing >masks. The purpose of this emess is to respone to Nance, >to let you know a little about my situation and to offer to >help if I can. I actually prefer fax to emess. I work at >home and have to go through Forsythe at Stanford for email; >the fax board is available on my 486 screen with a single >keystroke. My number is 415-327-6860. > >This note is much longer than I expected. But I know how >concerned you must be and I know what your friend is going >through. He or she should feel free to corresponde with me >by mail (116 Lois Lane, Palo Alto, CA 94303) or fax or e-mail. > >Thanks for your interest. This is the sort of support that >keeps ALS folks hanging in. My regards and good wishes to >your friend. Bob Hess >-------------------------------------------------------------- > Bob ... It is great to hear from you. You are the first response to a mailing (a regular USPS mailing) that I did a few days ago to over 200 individuals, institutions, etc. that are in some way related to ALS. Hopefully it was a good "outreach" idea. The person who had the mention in LINK (Spring 1992, Vol 6, No. 1) about e-mail was Thomas Maloney (10304 Ridgemoor Dr.; Silver Spring, MD 20901). His e-mail addresses are: PRODIGY ... DMWB58B, GENIE ... T.MALONEY, but PRODIGY folk can only talk with each other (no Internet-gateway) and the GENIE folk, though they do have an Internet-gateway only a few people know how to use it (or it may be a value-added service that is not implimented by all GENIE subscribers). I tried to send him an e-mail message but I am not certain my "Internet" message made it to him. Some days ago I mailed a "hardcopy" of our e-mail messages to him so he will be informed of this effort. By the way, a recent letter from Mike Gault of MDA mentioned that there is an ALS Interest Group on GENIE ... so we need to be checking this out ASAP. Please let us know details about SeniorNet. It sounds most interesting. Hope to be keeping in touch. Thanks for the note. rgds,bro == end of als 11 ==