=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#116, 12 August 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ----- == == This e-mail list has been set up to serve the world-wide == == ALS community. That is, ALS patients, ALS researchers, == == ALS support/discussion groups, ALS clinics, etc. Others == == are welcome (and invited) to join. Currently there are == == 290+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == Sorry, but this is *not* a LISTSERV setup. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== CONTENTS OF THIS ISSUE: 1 .. ALS Association (USA) 2 .. ALS & the IRS 3 .. Flying & ALS 4 .. trackball adaptation wanted 5 .. ARS (France) 6 .. SOD1 7 .. ABS & ALS ? 8 .. Cerebral Palsy Mailing List 9 .. NORD (1) ===== ALS Association (USA) ========== Lynn Klein, VP Patient Services Amyotrophic Lateral Sclerosis Association 21021 Ventura Boulevard, Suite 321 Woodland Hills CA 91364 TEL 818-340-7500 FAX 818-340-2060 TEL 800-782-4747 (Patient Hot Line) (2) ===== ALS & the IRS ========== >From : Fulco_L@cmail.bls.gov Date : Fri, 12 Aug 94 15:29:00 EST Subject: ALS & the IRS I've just learned about your bulletin board, but I can see it has been up for a while. Has anyone ever contributed any information about how the IRS treats expenses for modifications to a home to accomodate an ALS patient? I was diagnosed 11/93, and we now plan some renovations to make my life easier as time goes on. Have others had any experience with this? Larry Fulco (3) ===== Flying & ALS ========== X-Mailer: America Online Mailer Sender : "GlennB7490" Date : Mon, 08 Aug 94 17:17:07 EDT Subject : Flying Hi, Everyone. I want to offer one small, but important, correction to the letter written by Mike Doliton in ALSD 115. Commercial aircraft are indeed pressurized, but not to 1 atmosphere of pressure. Generally, they are pressurized to something less than 1 atm. If you've ever experienced the need to "clear your ears" when a plane ascends or descends, you've been through a change in air pressure. Airlines try to be considerate of those with special sensitivity to air pressure changes and can, within limits, increase the air pressure in the passenger cabins. They do it for scuba divers who may be more susceptable to the bends when entering areas of low air pressure. The amount of pressure they can achieve inside is related to the amount of pressure outside. The greater the altitude, the less pressure outside the plane, and therefore, inside the plane as well. It is probably advisable that anyone with severe breathing difficulties consult with their pulmonologist before flying and to ask the airline if it can make any adjustments to cabin pressure while you are aboard. Best Wishes, Glenn Busbin (4) ===== trackball adaptation wanted ========== Date : Fri, 12 Aug 1994 10:30:24 EDT Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3564 -------------------------------------------------------------- To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send electronic mail to Bill McGarry at any of the following addresses: UUCP: uunet!bunker!wtm INTERNET: wtm@bunker.afd.olivetti.com BITNET: l-hcap@ndsuvm1.bitnet Fidonet: The Handicap News BBS (141/420) 1-203-926-6168 (300 - 14,400 baud, 24 hours) Bill McGarry (Moderator) (203) 926-6187 =============================================================== Subject: trackball adaptation wanted >From : sguerlai@magnus.acs.ohio-state.edu (Stephanie A Guerlain) I have a friend with Lou Gehrig's disease. He is able to operate a PowerBook (portable Macintosh) fairly well, since he can move his left hand, and the PowerBook is controlled with a trackball (an upside down mouse that does not require movement of the arm, just the fingers). He can move the cursor by moving the trackball, and select items, by clicking the mouse button, but he has trouble holding the mouse button down and moving the trackball at the same time (the "drag" operation required for many tasks). I thought a switch that would hold the mouse button down for him would be a good solution. Before jerry rigging one myself, I thought I'd ask if anyone knows of a product that does this already. I would want something that would allow him to move the cursor to where he wants, hit the switch, which would depress the mouse button, drag to the end of his selection, and then hit the switch again to release the mouse button. The second thing he would need is an on-screen keyboard. Any recommendations out there for a Macintosh version? The third thing he needs is the computer! Any used PowerBook 180c computers out there? Finally, I was impressed with how some features of the PowerBook were naturally beneficial to his situation. 1) Since it is so light weight, it can rest on his lap, so he doesn't need to have a bed table to hold the computer. 2) Since a PowerBook will "sleep" with disuse, he doesn't have to turn it off, and can just hit any key on the keyboard to wake it up. These two features allow him to leave the computer within reach most of the time and use it without the aid of a nurse to set it up for him each time. If I can get the right equipment, maybe he'll be able to do some things again. Currently, he can only lie in bed and look around, since he's lost most motor control and most speech capability. Any comments/help/insights would be appreciated. -stephanie guerlain, sguerlai@magnus.acs.ohio-state.edu (5) ===== ARS (France) ========== Here is updated contact information for France. M. Claude Blanchard, President A.R.S. -- Association pour la Recherche sur la Sclerose Laterale Amyotrophique 24 rue Lacharrierre 75011 Paris == FRANCE == TEL (16-1) 43 38 99 89 FAX (16-1) 43 38 31 59 E-M ??? (6) ===== SOD1 ========== =========================================================================== Title : Down-regulation of copper/zinc superoxide dismutase causes : apoptotic death in PC12 neuronal cells Author : Troy C.M.; Shelanski M.L.; Source : 1994 91/14 (6384-6387) PNASA Proceedings of the National : Academy of Sciences of the United States of America Abstract : The discovery of missense mutations leading to reduced enzymatic activity in the copper/zinc superoxide dismutase (SOD1) in human familial amyotrophic lateral sclerosis has heightened interest in the role of free radicals in neurodegenerations but left the mechanisms by which they may cause neuronal death unexplained. We have approached this problem by specifically inhibiting the synthesis of SOD1 in cultured PC12 cells with antisense oligonucleotides. Cell survival in both untreated and nerve growth factor (NGF)-treated PC12 cells was inhibited by down-regulation of SOD1, with NGF-treated cells dying at lower levels of inhibition than untreated cells. Dying cells showed DNA degradation characteristic of apoptosis and could be rescued by the antioxidant vitamin E, with a combination of vitamin E and NGF being most efficacious. These results suggest that the induction of cell death by inhibition of SOD1 is due to free radical induction of apoptosis and that growth factor therapy for free-radical-mediated disease may require antioxidants in order to be effective. ============================================================================= (7) ===== ABS & ALS ? ========== COPIAGUE, N.Y., Aug. 9 /PRNewswire/ -- American Biogenetic Sciences, Inc. (ABS) (Nasdaq: MABXA), the global biopharmaceutical company specializing in cardiovascular and neuroscience product development, reported today that Dr. Nathan B. Dinces, 39, has joined the Company as Executive Vice President for Corporate Development and Licensing. "In the ABS neuroscience program," Mr. Roach added, "products are in development to treat epilepsy and neurodegenerative diseases such as Alzheimer's disease, Parkinson's disease and Amyotrophic Lateral Sclerosis. ============================= Two lead compounds are under consideration by a number of leading worldwide pharmaceutical companies," the ABS Chairman noted. American Biogenetic Sciences, Inc. (ABS) is a biopharmaceutical company which conducts research and development at The University of Notre Dame, Indiana, and throughout its Centers of Excellence in the U.S., Europe, Russia and China. Its objective is the commercialization of products developed out of its cardiovascular and neuroscience programs. ABS's research employs monoclonal antibody-based products generated from the Company's patented antigen-free mouse colony. The cardiovascular research program focuses on the diagnosis, treatment and prevention of cardiovascular disease. The neuroscience research program addresses the diagnosis and treatment of Alzheimer's disease, treatment for epilepsy and other neurodegenerative disorders. CONTACT: Leonard W. Suroff, Shareholder Relations of American Biogenetic Sciences, 516-789-2600 (8) ===== Cerebral Palsy Mailing List ========== Date : Mon, 25 Jul 1994 01:01:16 EDT Sender : L-HCAP List >From : Bill McGarry Subject: Cerebral Palsy Mailing List Dear Handicap Digest reader, Even though a notice of the Cerebral Palsy mailing list will appear in one of the next few issues of the Digest, I wanted to send a notice outside the normal channels in order to publicize the Cerebral Palsy mailing list which I feel will be a valuable resource for many people. If you would like to subscribe to this mailing list, send mail to listserv@sjuvm.stjohns.edu (or LISTSERV@SJUVM1 if you're on BITNET) Leave the subject blank and then as your message, enter: subscribe c-palsy firstname lastname Or just let me know and I will add you from here. (Please note that the list name is C-PALSY and not "CPALSY" as I stated in earlier postings and in the Exceptional Parent magazine article.) Bill McGarry (203) 926-6187 UUCP: {oliveb, uunet}!bunker!wtm INTERNET: wtm@bunker.afd.olivetti.com BITNET: l-hcap@ndsuvm1.bitnet Fidonet: The Handicap News BBS (1:141/420) 1-203-926-6168 (300 to 14400 baud, 24 hours) (9) ===== NORD ========== The National Organization for Rare Disorders is an excellent resource that ALS people should know about. Reprints of articles from their Rare Disease Database are available for $4.00 per copy. Among the hundreds of diseases that they provide information about is Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease). Also, CompuServe subscribers may enter their database by typing GO NORD. They also publish a useful newsletter ORPHAN DISEASE UPDATE, with news about orphan drugs, rare disorder support groups, health reform news, research, etc. National Organization for Rare Disorders (NORD) P.O. Box 8923 New Fairfield CT 06812-8923 TEL 203-746-6518 FAX 203-746-6481 == end of als 116 ==