Amyotrophic Lateral Sclerosis (ALS)

Request for Public Comment on the Draft ALS Strategic Plan

NINDS requested additional input on the Draft ALS Strategic Plan from all stakeholders, including people living with ALS, caregivers, people with genetic risk, scientists, clinicians, health care providers, advocates, or any other interested parties. Comment submission was due by December 16, 2022 to ensure full consideration.  View and/or download the DRAFT Strategic Plan(pdf, 1818 KB).


The National Institute of Neurological Disorders and Stroke (NINDS) has initiated a strategic planning process to identify the highest priorities for research that will lead to the discovery of effective interventions for the diagnosis, treatment, management, prevention, or cure of ALS. The strategic planning process began with a public Request for Information (RFI) that was open until February 11, 2022. RFI responses(pdf, 180 KB) are available to the public and were shared with working groups of scientists, clinicians, advocates, and people living with ALS who used this information, along with their own knowledge of the research landscape, to develop priorities for accelerating research on the biology behind ALS, translating fundamental research into potential ALS therapies, optimizing ALS clinical research, improving the quality of life for persons living with ALS through research, and identifying opportunities for collaborations and partnerships. These working groups presented their findings at a meeting on October 26 and 27, 2022, which was free and open to the public and included opportunities for public input on the priorities.  The research priorities are posted online for public comment until December 16, 2022 and will be presented to the National Advisory Neurological Disorders and Stroke Council (NANDSC) for approval on February 1-2, 2023.


Engaging People Affected by ALS

Nominations for People living with ALS, people at risk for developing ALS (including premanifest mutation carriers), and caregivers, as representatives to participate on the Steering Committee and as co-chairs or members for topical Working Groups occurred in January. Thank you to all those who submitted recommendations – we are grateful to have these perspectives integrated early and often throughout this process.

Submitting Grant Applications

We encourage researchers with ideas for grant applications that address the ALS Strategic Plan priorities to contact NIH Program Officials for ALS to help them identify the most appropriate funding opportunities and grant programs.  List of NIH Program Officials for ALS grant applications

Updated Draft Strategic Plan(pdf, 1818 KB)