National Health Council — Voluntary Health Agency Guide

The ALS Association

The ALS Association (ALSA) is the only national not-for-profit voluntary health organization dedicated solely to the fight against Lou Gehrig's disease. Its mission is to find a cure for ALS and improve living with ALS through research, patient services, public education and public awareness programs. ALSA's comprehensive research program has awarded nearly $27 million to fund research seeking to identify the cause, means of prevention, and cure for ALS. Currently, ALSA-funded scientists are looking into 15 different research areas relevant to ALS. ALSA helps patients and families cope with the day to day challenges of living with ALS by providing information, resources, and referrals to many sources, including a wide variety of community services. ALSA's network of chapters provides localized patient and family support in communities across the country. The ALSA network plays a lead role in advocacy for increased public and private support of ALS research and health care reform that responds to the demands imposed by ALS. ALSA's advocacy efforts in Washington, D.C. have raised the profile of ALS at the White House, among members of Congress, and within federal agencies, including the National Institutes of Health, the Food and Drug Administration, and the Social Security Administration.

About the condition(s):

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that attacks nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With all voluntary muscle action affected, patients in the later stages of the disease become totally paralyzed. The mind remains unaffected for the majority of people with ALS.