RILUZOLE (Rilutek) At present, Riluzole is the only drug approved by the FDA for the treatment of ALS. It is also the only drug shown to extend the survival of ALS patients. In a phase III clinical trial involving nearly one thousand participants, the group treated with Riluzole showed a modest, but statistically significant increase in length of survival. One theory of the cause of ALS is that Glutamate, a neurotransmitter, accumulates to toxic levels around motor neurons causing cell death. Riluzole seems to do two things: slows the release of Glutamate from neurons and blocks the effect of glutamic acid on Glutamate receptors. Riluzole or Rilutek is manufactured by Rhone Poulenc Rorer, (RPR). For information about Riluzole, contact RPR at the below address or phone number. For information on the Rilutek Early Access Program, (EAP), contact the National Organization for Rare Disorders, (NORD), at the below phone number. Rhone-Poulenc-Rorer (Rob Partridge) 500 Arcola Road Collegeville, PA 19426-0107 Tel: (800) RX TRIAL Tel: (800) 798-7425 Rilutek Early Access Program National Organization for Rare Disorders Tel: (800) 459-7599 Fax: (203) 746-8483 NEURONTIN (Gabapentin) Neurontin is currently available by prescription for the treatment of seizure disorders. Investigators believe that it may have anti-Glutamate properties, but this hasn't yet been proven. Currently, Parke-Davis is investigating any beneficial effects. So far there is no evidence that Neurontin is effective in the treatment of ALS although, patients who have taken it report a sense of well being. For more information, contact: Dept. Of Neurology Attn: Amy Quinn, RN California Pacific Medical Center 3698 California Street, Rm 545 San Francisco, CA 94118 Tel: (415) 750-6261 Tel: (415) 750-6040 Fax: (415) 750-5022 BDNF (Brain Derived Neurotrophic Factor) BDNF is a nerve growth factor. It is a naturally occurring protein produced by the human body in small quantities. The BDNF being used for this study is a synthetic version produced by using recombinant DNA. Some experiments in animals have shown that BDNF helps injured motor neurons survive for longer periods of time. The first human tests on ALS patients indicated slower deterioration of breathing and possibly longer survival. For more information contact: AMGEN, Professional Services 1840 DeHavilland Dr. Thousand Oaks, Ca. 91320-1789 Tel: (805) 447-1000 FAX: (818) 865-3707 VITAMINS Many investigators believe that nerve cells may die as a result of oxidation injury. Although there have been no proven benefits to anti-oxidant therapy, interest has been somewhat renewed since the recent discovery of "the ALS gene," (in Familial ALS), near the gene for an enzyme, Superoxide Dismutase, responsible for protection against oxidation. The MDA Medical Advisory Committee recommends: Vitamin C: 1,000 mg 3 times a day ( 3 grams daily ) Vitamin E: 800 units 3 times a day ( 2,400 units daily ) Beta-Carotene 10,000 units 3 times a day (30,000 units daily ) MYOTROPHIN or IGF-1 (Insulin-like Growth Factor) A naturally occurring protein that helps the nervous system recover from injury. It is thought to promote survival of motor neurons and enhance regeneration of damaged motor neurons. For more information contact: Cephalon, Inc. Assistant Director Corporate Communications Tel: (800) 797-0705 BCAA (Branched Chain Amino Acids) There is some evidence that treatment with BCAA (Leucine, Isoleucine, Valine) is not only ineffective, but may actually be detrimental . For more information contact: The ALS Association 21021 Ventura Blvd., Suite 321 Woodland Hills, CA 91364-2206 GDNF (Glial-Derived Neurotrophic) For more information contact: AMGEN, Professional Services 1840 DeHavilland Dr. Thousand Oaks, Ca. 91320-1789 Tel: (800) 447-1000 Tel: (800) 772-6436 FAX: (818) 865-3707 CNTF (Ciliary Neurotrophic Factor) For more information contact: National Organization for Rare Disorders Tel: (800) 999-6673 Fax: (203) 746-6481 CytoTherapeutics Seth A. Rudnick, M.D., ext. 2113 or Elizabeth Razee, ext. 2132 Tel: (401) 272-3310