National Organizations

These national ALS organizations are dedicated to fundraising and researching possible medications and cures for ALS and related disorders.

National ALS Organizations

The ALS Association is a non-profit, voluntary health agency in search of a cure for ALS. Through research, patient and community services, public education, and advocacy, ALSA provides help and hope to those facing the disease.

ALS Association
27001 Agoura Road, Suite 150
Calabasas Hills,CA 91301-5104
Phone:(818) 880-9007
www.alsa.org
Project ALS strives to bring effective treatments to patients with ALS, and ultimately find a cure. Most funds raised go towards supporting research in the areas of genetics, drug discovery, stem cells, and disease pathways.
ALS Association.

Project ALS
900 Broadway, Suite 901
New York, NY 10003
Phone: (800) 603-0270
www.projectals.org
The Muscular Dystrophy Association is a voluntary health agency bringing scientists and the public together to fight neuromuscular diseases through research, medical and community services, and health education. The ALS portion of the MDA website provides links to valuable information and services such as MDA Clinics, ALS Research and Clinical Centers, Support Groups, Equipment Funding, Loan Program and Repairs/Modifications, Summer Camp Program, MDA Chat Groups, and MDA services for individuals and families.

Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, AZ 85718
Phone: (800) 344-4863
www.mdausa.org
For the ALS portion of the MDA website www.als-mda.org
NORD is a group of voluntary health organizations, serving patients with rare diseases and their families through education, advocacy, research, and service programs. Their purpose is to commit to the identification, treatment, and cure of rare diseases.

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue, PO Box 1968
Danbury, CT 06813-1968
Phone: (203) 744-0100 , (800) 999-6673 (voicemail only), TDD TDD Number: (203) 797-9590
www.rarediseases.org
The National Institute of Neurological Disorders and Stroke (NINDS) researches disorders of the brain and nervous system. It is one of several research institutes and centers that make up the National Institutes of Health (NIH). The NIH, located in Bethesda, Maryland, is an agency of the Public Health Service within the US Department of Health and Human Services.
NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Phone: (800) 352-9424
www.ninds.nih.gov
The Eleanor and Lou Gehrig MDA/ALS Center at The Columbia-Presbyterian Medical Center Neurological Institute of New York is one of the country’s biggest centers for ALS comprehensive care. They provide patient care, research the cause and cure for ALS and other motor neuron diseases, educate health care professionals, and reach out to their patients’ communities. They join forces with government agencies and nonprofit agencies (NIH, MDA, ALSA) in caring for people with ALS and finding a cure.

Eleanor and Lou Gehrig MDA/ALS Center
The Neuologic Institute
710 West 168th Street, 9th floor
New York, NY 10032-3726
Phone: (212) 305-1319
www.columbiaals.org
The Robert Packard Center for ALS Research at The Johns Hopkins School of Medicine researches new therapies to slow or cure ALS.

Robert Packard Center for ALS Research at Johns Hopkins
5801 Smith Avenue, McAuley Suite 110
Baltimore, Maryland 21209
Phone: (410) 614-5972
www.alscenter.org
The University of Miami ALS Clinical and Research Center provides care and multifaceted support for patients with ALS and supports the families from diagnosis to the end stages of the disease. They also conduct advanced research into the cause and cure of ALS. This website also contains contact information for ALS Certified Clinical Care Centers across the country.

University of Miami Kessenich MDA ALS Center
1150 NW 14th Street, Suite 701
Miami, FL 33136
Patients Only: (800) 690-ALS1 (2571), Local Calls: (305) 243-7400
www.miami-als.org
The ALS Therapy Development Foundation is a nonprofit biotech company researching treatment for ALS patients.

ALS Therapy Development Institute
215 First Street
Cambridge, MA 02142
Phone: (617) 441-7200
www.als.net

Important Treatment Considerations

Evaluate serum ALT levels every month during the first 3 months of treatment, and every 3 months during the remainder of the first year. Thereafter, serum ALT levels should be periodically evaluated more frequently in patients who develop elevations. Rilutek should be discontinued if ALT levels increase to 5 times ULN or if clinical jaundice develops.
Advise patients about the potential for dizziness, vertigo, or somnolence and not to drive or operate machinery until they have sufficient experience on Rilutek.
Advise patients to report any febrile illness; measure WBCs.
Use Rilutek with caution in patients with concomitant liver insufficiency; caution should be exercised when prescribing Rilutek to patients taking drugs that are potentially hepatotoxic or highly protein bound:
- Interactions may also occur when riluzole is given concurrently with agents that affect hepatic CYP 1A2 activity.^*

*CYP 1A2 is the principal isoenzyme involved in the initial oxidative metabolism of riluzole. CYP 1A2 inhibitors, such as amitriptyline, caffeine, phenacetin, theophylline, or quinolones, may potentially decrease the rate of riluzole elimination. CYP 1A2 inducers, such as cigarette smoke, charcoal-broiled food, rifampicin, or omeprazole, may potentially increase the rate of elimination.

The health information contained herein is provided for general educational purposes only. As a healthcare professional, you are the single best source of information regarding healthcare for your patients with ALS. Please contact sanofi-aventis if you have any questions or need more information about treating ALS.