The Nat’l ALS Registry: Hope for Patients, Resources for Research

Mr. Alan Alderman, ALS patient and advocate

The National ALS Registry provides hope for patients and data for researchers.

Amyotrophic lateral sclerosis (ALS) is a fatal neurological disease that attacks the nerve cells. It first gained national attention as Lou Gehrig’s disease, named after the famous baseball player who was diagnosed with ALS in 1939. To date, the causes of ALS are unknown, and there is still no known cure. The disease strikes quickly, usually leading to death within 2–5 years of diagnosis.

The National ALS Registry helps gather confidential information from those who are living with this disease. It is the only population-based registry in the U.S. that collects information to help scientists learn more about who gets ALS and its causes. According to the most recent estimates from the National Registry, nearly 17,000 people in the U.S. are living with ALS.