Date: Thu, 3 Nov 94 10:20:54 EST From: Bob Broedel To: Stuart.Neilson@brunel.ac.uk Subject: Re: ALS Interest Group List =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#122, 31 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 == == 320+ 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 .. New CNTF/BDNF paper 2 .. Australian contacts 3 .. Request for info re forms of familial ALS 4 .. Call for Bulbar patients 5 .. Live Cell Therapy 6 .. How to start Neurontin and Bulbar patient dialog 7 .. Neurontin 8 .. online consumer health - 1 9 .. online consumer health - 2 10 . Forbes Norris MDA/ALS Research Center (1) ===== New CNTF/BDNF paper ========== Date : Fri, 26 Aug 94 11:55:01 -0400 >From : "Dr. Kenneth Fischbeck" Subject: New CNTF/BDNF paper A recent paper which may be of interest to the group is the following: Mitsumoto H, et al. Arrest of motor neuron disease in wobbler mice cotreated with CNTF and BDNF. Science 265:1107-1110, 8/19/94. Alternate day treatment with both CNTF and BDNF led to better results in arresting motor neuron disease progression in wobbler mice than did either agent alone. K. Fischbeck, M.D. (fischbeck@a1.mscf.upenn.edu) (2) ===== Australian contacts ========== Date : Tue, 30 Aug 1994 10:30:54 -0700 (PDT) >From : Alan Baker Subject: Australian contacts My sister-in-law in Australia has ALS and I sent her a hardcopy of one of your newsletters. She shared it with her MND support group and her doctor and is most enthusiastic about joining the mailing list. She is a computer novice, so I'd like to help her get online. I'd like to find out what internet service providers are available in Australia. Do you have any Aussies on the mailing list to whom I could pose this question? Alan Baker San Jose ==== = There are several Australians on-line with us here and they are = the very helpful types. Probably you will be hearing from them soon. = Also, you may want to contact the following for subscriber info: = = AARNet-Australian Academic and Research Network = aarnet@aarnet.edu.au = ACSnet-Australian General Access Network = kre@munnari.oz.au = Pactok-Private Fido Network in Asia/Pacific Region = pacctok@peg.apc.org = PEGASUS-Australian Environmental, Health & Human Rights Network = support@peg.pegasus.oz.au = rgds,bro ==== (3) ===== request for info re forms of familial ALS ========== Date : 31 Aug 1994 10:18:23 -0400 >>From : Tracy J. Brown o/o Subject: Request for further info re. forms of familial ALS... In ALS Digest #120, Barry Goldberg posted an MDA Research Report (#50). It mentioned 3 forms of familial amyotrophic lateral sclerosis (ALS) that have been described by MDA researchers, and are referred to as ALS1, ALS2 and ALS3. The report continued: "Clinically these forms of familial ALS cannot be distinguished from the sporadic (noninherited) form of ALS. However, ALS2 is autosomal recessive -- a defective gene from each parent must be inherited in order for the child to have the disease -- and this form of ALS has an early onset and slower progression of symptoms...." Does anyone on the list have any more info re. the average onset age or the average life expectancy for these three forms of familial ALS, or know where to find further info? Thanks, Tracy J. Brown (tracy.brown@om.wang.com) (4) ===== Call for Bulbar patients ========== Date : Tue, 30 Aug 94 07:48:31 EST >From : "Mike Doliton" Subject: Call for Bulbar patients To all, I would like to start a dialog for Bulbar onset patients and their care givers. I would like to keep a tally of those who are on Neurontin and whether they are seeing any improvement and what that improvement is. Also people who are on Riluzole and whether they are seeing any improvement and what that improvement is. Please mention anything else that is helping in the Bulbar case so I can pass that along like antioxidant therapy or calcium channel blockers. Regards, Michael Doliton Sony Medical Systems (5) ===== Live Cell Therapy ========== Date : Wed, 31 Aug 94 10:02 EDT >From : joan@sybus.com (Joan Smith) Subject: Live Cell Therapy Does anyone have any information on the success of Live Cell Therapy as a treatment for ALS? We have learned that Live Cell Therapy is being done at two clinics in Mexico: American Biologics in Tijuana International Medical Center in Juarez Does anyone have any experience/knowledge of these particular clinics? Thanks in advance for your input. Joan Smith (6) ===== How to start Neurontin and Bulbar patient dialog ========== Date : Tue, 30 Aug 94 07:45:50 EST >From : "Mike Doliton" To : Leigh Redding , als@huey.met.fsu.edu Subject: How to start Neurontin and Bulbar patient dialog Mike, >I too have the Bulbar onset variety. This past April I ended up in the >ICU with a collapsed lung. I fooled them and got better. I do have a trach >now which nullifies any speech I had left. I also have encountered much >muscle weakening, loss really, in my hands and fingers. I can still use >my hands but the strength and dexterity of the fingers have suffered the >most. I'm scared sick of having a trach put in. How did you get the nerve up to have them put one in? >I found your comment regarding your wife's understanding of your speech >quite joyful. I don't care what the subject is but my wife can read my >lips and hand signals most every time. A friend recently gave me a Sound >Blaster from Creative Labs plus sterio speakers. I am still learning how >to spell some difficult sounding words phonetically. I can already talk >to her and people on the telephone. Right now their patience is definatly >a virtue. Yes, it's good that our wives can read our signs and lips. I have a sound blaster too in my computer. I talk to my wife with it and we have long conversations with it. She loves it. Good luck with yours. >I'm after a couple of things: >1st - let's start a dialog among ourselves and any other "Bulbar" ALS >types, and >2nd - How did you locate a supply and gain approval for Neurontin? >Enough for now. Thanks for listening and I look forward to a continuing >dialog with you, regards 1. I think a dialog amoung "Bulbar onset" people would be spiffy. I'll put out a call once in a while for the dialog to start. 2. Neurontin is on the market. No problem for the supply. I asked my neuro for the prescription. At first he was skeptical but when I mentioned others were taking it and Dr. Munsat in Boston was using it as a glutamate blocker then my neuro agreed to prescribe it. I told him we have to be a little creative when there is no real cure for this disease. We have to try different meds. and then he came around. Regards, Michael Doliton Sony Medical Systems (7) ===== Neurontin ========== Date: Fri, 26 Aug 94 15:45:53 EST >From: "Mike Doliton" To: SadieJanie@aol.com, als@huey.met.fsu.edu Subject: Neurontin I know that person in Florida who said he saw definate improvment when taking Neurontin. That experience prompted me to take Neurontin. I do think I see some improvement in my swallowing. I was coughing alot at meals but now I go through a meal without any coughing. Just once in a while I have to cough up some food partical or liquid that gets in my windpipe. My speech is still hard to understand but I try. Sometimes my wife does understand me. I think the placebo effect is there too. But who cares. If it (Neurontin) seems to help, take it. I am on 900 mgs. per day in three doses of 300 mgs. each. So, I think its worth a try. I feel no side effects so far. I have been on Neurontin for about 4 weeks. I hope you hear from some others so you get a good smattering of feelings and reports to make your decision for your mother. It's not good to take one person's opinion. Make a judgement from several people's reports. Regards, Michael Doliton Sony Medical System (8) ===== online consumer health - 1 ========== >From : DrTomHI@aol.com X-Mailer: America Online Mailer Date : Mon, 29 Aug 94 18:19:16 EDT Subject : online consumer health Dear Bob, I am enjoying ALS Digest and feel that you are doing important work that others should know about. With your permission, I would like to include info on ALS-ON-LINE in a book on online consumer health I am doing for Addison-Wesley. I am also coordinating a number of upcoming meetings that may be of interest to members of your list. If you think it appropriate, please include some or all of the folowing in an upcoming issue of ALS Digest. Many thanks, Tom Ferguson *********************************************************************** Upcoming Meetings on Consumer Health Informatics *********************************************************************** Consumer Health Informatics: Bringing the Patient into the Loop WHEN: *October 29-30, 1994 * Dallas WHERE: *November 5, 1994 * Washington, DC *May 18-19, 1995 * Boston WHAT: *Conference to show how patients can use computers to play an expanded role in their own health care The last few years have seen the emergence of a new breed of medical computer programs and networks designed to be used by health consumers. These systems include: *On-line, self-help support groups *Home health workstations for chronic disease *Patient input and access to computerized medical records *Computer programs for short-term psychotherapy *Fax, voicemail, and other phone-based systems *Interactive systems which support patient decision- making and provide medical information and advice Preliminary studies suggest that these new programs can help cut health costs and extend services while improving the quality of care. A wide range of these new patient-centered computer programs will be showcased at these meetings. *********************************************************************** Dallas, Texas, October 29-30, 1994, 2 Day Workshop Consumer Health Informatics: Bringing The Patient Into The Loop Major Two-Day conference with 20 faculty members and estimated 200-300 attendees. Extensive demonstrations and exhibits of consumer-oriented telecommunications & computer applications. Brochures available on request. Conference Director: Tom Ferguson To receive a full conference program, please contact Paige Juergens at the Texas Back Institute Research Foundation. Phone: (214) 612-6417 / Fax: (214) 612-6431 / E-mail: spine1@onramp.net *********************************************************************** Washington, DC, November 5, 1994, 1/2 Day Workshop, 2:00 PM - 5:30 PM Consumer Health Informatics: Bringing The Patient Into The Loop Faculty: Tom Ferguson, Warner Slack This is a pre-conference tutorial for the Annual Symposium on Computer Applications in Medical Care (SCAMC), the annual meeting of the American Medical Informatics Association. For info: AMIA (301) 657-1291 *********************************************************************** Boston, MA, May 18 - 19, 1995, Two Day Workshop Consumer Health Informatics: Bringing The Patient Into The Loop Center for Clinical Computing, Harvard University School of Medicine Conference Directors: Tom Ferguson, Warner Slack For info: (617) 732-5925 (CCC/Harvard) *********************************************************************** RECOMMENDED READING *************************************************** Consumer Health Informatics: Bringing The Patient Into The Loop Proceedings of the First National Conference on Consumer Health Informatics Univ of Wisconsin, July, 1993. Available from: Mailcomm Plus; 2729 Exposition; Austin TX 78703 (512) 472-1296 voice (512) 476-3930 fax *********************************************************************** Tom Ferguson, M.D. Research Fellow, Center for Clinical Computing, Harvard University School of Medicine. Medical Editor, Whole Earth Catalog for the Millenium President, Self-Care Productions ********************************************************** 3805 Stevenson Avenue * Austin, Texas 78703 USA voice: 512-472-1333 fax: 512-472-1345 e-mail: DrTomHI@aol.com author of the upcoming book: Self-Care Online: A Guide to Health Resources, Information & Support Networks and Self-Help Communities in Cyperspace (9) ===== online consumer health - 2 ========== Date : Mon, 22 Aug 1994 12:39:57 GMT Sender : "Clinical WANS: Design & Usage" : >From : phil garfinkel Subject: Free Med Help/Support BBS Med Help International provides medical information written in non-technical terminology in order to support patients and their families who have been struck by the tragedy of serious illnesses. We are comprised of an all-volunteer staff of physicians and other health care professionals who are electronically connected. Med Help has set up a free Bulletin Board System (BBS) so that people with modems and PCs can dial-in for information or to meet other people in similar situations. If you would like to follow up or want to help out you can contact us via e-mail...or via the address below... Our BBS is on Long Island and it is free to the public. The BBS phone number is 516-423-0472 Best Regards to All, Phil G. philg@world.std.com MED HELP INTERNATIONAL INC. 6300 North Wickham Road Suite 130, Box 188 Melbourne, FL 32940-2029 Voice: (407) 253-9048 Fax: (407) 253-1819 BBS: (516) 423-0472 Internet: philg@world.std.com Compuserve: 73174,2405 or 73323,3050 (10) ===== Forbes Norris MDA/ALS Research Center ========== TUCSON, Ariz., Aug. 30 /PRNewswire/ -- There is new hope for people with amyotrophic lateral sclerosis, particularly those living in the western United States, because the Muscular Dystrophy Association today established a sixth regional research and clinical center. The Forbes Norris MDA/ALS Research Center at California Pacific Medical Center in San Francisco will facilitate clinical trials of potential treatments for ALS, or Lou Gehrig's disease, and offer families a broad range of clinical and support services. Some 20,000 Americans are affected by ALS, a progressive, degenerative motor neuron disease that causes deterioration of muscles and nerves, and leads to almost total paralysis. Life expectancy is typically two to five years after diagnosis, and there's no known treatment or cure. Ed Fry, star of CBS-TV's As the World Turns and lay leader of MDA's ALS effort, hailed the expansion of the Association's program against the disorder. As the world's leading nongovernmental sponsor of ALS research, and the country's only voluntary health agency providing medical care for those with ALS, MDA has spent more than $100 million in its ALS program, said Fry, chairman of MDA's ALS Division, who lost his mother, Virginia, to ALS in 1988. Given the international reputation of California Pacific's ALS program, the addition of the Forbes Norris Center to MDA's nationwide effort gives those affected by ALS and their families a gratifying boost in hope and help. Dr. Robert G. Miller, director of the San Francisco center, is conducting human trials of three potential drug therapies against the deadly neuromuscular disease. The center was named for the late Dr. Norris, a neurologist who specialized in studies of ALS. Some 250 people affected by ALS are treated at the Norris MDA/ALS Center, with more than 100 of them participating in three pharmaceutical trials. A fourth drug trial is slated to begin in October, said Miller, director of neuromuscular research at the Medical Center. There's real tangible hope for ALS patients that wasn't there a few years ago, said Miller. Thanks to recent findings in MDA's research effort, there's now a whole list of possible treatments that we can begin to evaluate for ALS. MDA devotes some $3 million a year to ALS research. The Association also sponsors a neuromuscular disease treatment clinic at the Medical Center, under Miller's direction. ALS patients voluntarily participating in the trials at the Norris center are receiving one of three experimental drugs that, in the laboratory, have shown a capacity to protect nerve cells against damage. Participants are regularly examined for side effects and for changes in muscle strength. Two of the compounds being tested at the center are nerve growth factors called CNTF and IGF-1. Nerve growth factors are natural substances that, in addition to protecting nerve cells, apparently enhance their development and survival under a variety of conditions. The center also participates in an international trial of riluzole, a newly developed drug that may be able to stop the powerful brain chemical glutamate from getting into nerve cells that control motor activity and killing them. The testing of glutamate blockers builds on the MDA finding that malfunction of a transporter protein may be responsible for excess glutamate in the brains of people with ALS. Each of the three trials involve some 1,000 patients worldwide. In October, the center hopes to start trials of Neurontin, another glutamate blocker. In another avenue of ALS research, MDA scientists have also discovered a genetic defect responsible for the inherited form of the disease, approximately 5 percent to 10 percent of cases. Other MDA- funded scientists are investigating ALS as a possible autoimmune disease. MDA also supports regional ALS research centers in Houston, New York, Los Angeles, Boston and Madison, Wis. People with ALS can also get assistance at 240 MDA clinics across the nation. MDA is a voluntary health agency working to defeat 40 neuromuscular diseases through programs of worldwide research, comprehensive patient and community services, and far-reaching professional and public health education. The 1994 Stars Across America! Jerry Lewis MDA Labor Day Telethon will be broadcast Sept. 4-5, originating from the Sahara Hotel in Las Vegas and carried by more than 200 Love Network stations nationwide. CONTACT: Jim Brown of MDA, 602-529-5317 Sara Kelley of California Pacific Medical Center, 415-923-3921 == end of als 122 ==