Special Programs for ALS Research

  • MDA funds more ALS research than any other voluntary health organization in the U.S.
  • Since its inception, MDA has dedicated almost $325 million to ALS research and health care services.
  • We currently support nearly 50 ALS research projects worldwide with a total commitment of $15 million.
  • Our "umbrella organization" status puts us in a unique position – we leverage the advances in research and best practices for clinical care from one disease to inform progress in others.
  • Our research advocacy efforts are prompting the U.S. Food and Drug Administration and other policymaking groups to address the unique needs of ALS patients and their families.

MDA ALS Clinical Research Network

In 2008, MDA established a nationwide consortium of five MDA-supported ALS centers that would each receive $100,000 per year to fund the infrastructure necessary for collaboration on clinical trials in ALS. The centers are located in Atlanta, Boston, Houston, New York and San Francisco.

MDA's Neuromuscular Disease Registry

In early 2013, MDA launched a neuromuscular disease registry through its national network of clinics. Through the registry, MDA aims to improve survival and quality of life for people with ALS and other neuromuscular diseases, and to expedite clinical trials and help make them more efficient. The Registry is being piloted at 25 MDA clinics to start; to learn more, check with your local MDA office. 

National ALS Registry

In 2010, the U.S. Centers for Disease Control and Prevention opened the National ALS Registry to compile a large database of information about the incidence and prevalence of ALS, how the disease develops, and what types of treatments and interventions are beneficial.

People with ALS and/or their caregivers are encouraged to register at cdc.gov/als, where they will be asked to fill out short surveys about their and their families' health, their military background, and their environmental and occupational exposures.

Familial ALS Registry (fALS Connect)

In 2011, the ALS Research Collaboration, a University of Miami-based team dedicated to the study of familial (inherited) ALS, launched the fALS Connect online familial ALS registry. The developers of this registry aim to connect families affected by familial ALS with scientists who study the disease, in an effort to accelerate development of treatments and cures. Membership is open to those who have familial ALS and their blood relatives.