| ALS Association | |
|---|---|
| Logo placeholder | |
| Location | Washington, D.C., USA |
| Type | Non-profit Research Foundation |
| Website | als.org |
| Founded | 1974 |
| Focus Areas | Amyotrophic Lateral Sclerosis (ALS), Motor Neuron Disease, Neurodegeneration |
The ALS Association is the leading non-profit organization dedicated to finding a cure for Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease. Founded in 1974, the organization funds research, provides patient care, and advocates for policies that benefit people with ALS and their families. The ALS Association is headquartered in Washington, D.C. and has chapters throughout the United States.
The organization has been instrumental in advancing ALS research, contributing to the discovery of multiple ALS genes including SOD1, C9orf72, FUS, and TARDBP. Through its Translational Advisory Boards and clinical trial programs, the ALS Association accelerates the development of new treatments for this devastating disease.
The ALS Association supports numerous clinical trials through its clinical trial network:
Funding research into stem cell therapies for ALS, including:
| Aspect | Research Focus |
|---|---|
| Genetics | C9orf72, SOD1, FUS, TARDBP, ANG |
| Biomarkers | Neurofilament light chain, p75ECD |
| Therapy | Gene therapy, small molecules, stem cells |
| Care | Multidisciplinary clinics, assistive technology |
The ALS Association funded research that led to the discovery of the C9orf72 gene expansion as the most common genetic cause of ALS and frontotemporal dementia. This discovery has revolutionized understanding of the disease and opened new therapeutic avenues.[1]
Support for the development of tofersen (Qalsody), an antisense oligonucleotide therapy for SOD1 ALS, which received FDA approval in 2023. This represents the first disease-modifying therapy for a genetic subtype of ALS.[2]
Funding research into neurofilament light chain (NfL) as a biomarker for ALS progression and treatment response, enabling more efficient clinical trials.
The Association supports a network of ALS clinics that provide:
The ALS Association advocates for:
The study of Als Association has evolved significantly over the past decades. Research in this area has revealed important insights into the underlying mechanisms of neurodegeneration and continues to drive therapeutic development.
Historical context and key discoveries in this field have shaped our current understanding and will continue to guide future research directions.
[1] Renton AE, et al. "A hexanucleotide repeat expansion in C9orf72 is the cause of chromosome 9p21-linked ALS-FTD." Neuron. 2011.
[2] Miller T, et al. "Phase 1-2 Study of Tofersen for SOD1 ALS." N Engl J Med. 2020.
[3] "ALS Association Annual Report." 2023.
[4] Benatar M, et al. "Neurofilament light chain as a biomarker in ALS." Nat Rev Neurol. 2022.
[5] "ALS Treatment Guidelines." Neurology. 2021.