shafer@skipper.dfrf.nasa.gov (Mary Shafer) (11/28/90)
Index Number: 11976
Does anyone have any information on primary lateral sclerosis?
Is there a support group? If not, is there a general support
group for gait disorders?
My mother-in-law was diagnosed with this about 15 years ago and
is interested in newer information.
--
Mary Shafer shafer@skipper.dfrf.nasa.gov ames!skipper.dfrf.nasa.gov!shafer
NASA Ames Dryden Flight Research Facility, Edwards, CA
Of course I don't speak for NASA
"A MiG at your six is better than no MiG at all"--Unknown US fighter pilotwtm@bunker.uucp (Bill McGarry) (11/28/90)
Index Number: 11977 Mary Shafer writes: >Does anyone have any information on primary lateral sclerosis? > >Is there a support group? If not, is there a general support >group for gait disorders? Although I do not know of any support group just for primary lateral sclerosis, there are two organizations that may be able to help. The first is the National Organization for Rare Disorders (NORD), which is an organization that specializes in information on rare diseases and will put you in contact with other people or parents of children with the same disease or disorder. Their address is: The National Organization for Rare Disorders (NORD) P.O. Box 8923 New Fairfield, CT 06812 (USA) Phone: (203) 746-6518 (800) 999-NORD NORD can also be reached on Compuserve. NORD has information on some 500 rare disorders and also has information on orphan drugs. There is also the ALS Association:; The Amyotrophic Lateral Sclerosis Association 15300 Ventura Boulevard, Suite 315 Sherman Oaks, CA 91403 (818) 990-2151 Hope this helps and good luck, Bill McGarry (203) 337-1518 UUCP: {oliveb, philabs, decvax, yale}!bunker!wtm INTERNET: l-hcap@vm1.nodak.edu BITNET: l-hcap@ndsuvm1.bitnet Fidonet: The Handicap News BBS (141/420) 1-203-337-1607 (300/1200/2400 baud, 24 hours) Compuserve: 73170,1064