Amyotrophic Lateral Sclerosis (ALS)

To inform the development of a new ALS Strategic Plan, NINDS is seeking input from people living with amyotrophic lateral sclerosis (ALS), families, caregivers, advocates, scientists, clinicians, and the broader community on the most important knowledge gaps and promising research opportunities that will lead to the discovery of effective interventions for the diagnosis, treatment, management, prevention, or cure of ALS. 

 

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Overview

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 will use 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 will present their findings at a meeting on October 26 and 27, 2022, which will be free and open to the public and will include opportunities for public input on the priorities. After the meeting, the working groups may modify the research priorities to take into account the public input. The research priorities will then be posted online for public comment before they are presented to National Advisory Neurological Disorders and Stroke Council for approval.

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.

Steering Committee Roster

Steering Committee Co-chairs

Robert H. Brown, Jr., D.Phil., M.D.
Department of Neurology
Director, Program in Neurotherapeutics
UMass Chan Medical School

Rita Sattler, Ph.D.
Professor, Department of Translational Neuroscience
Co-Director, ASU-BNI Interdisciplinary Graduate Program in Neuroscience
Director, BNI Research Education Programs
Barrow Neurological Institute Dignity Health - St. Joseph’s Hospital and Medical Center

Person Living with ALS

Layne Oliff, Pharm.D.
NEALS Research Ambassador
The International Alliance of ALS
MND Associations Patient Fellow

Caregiver

Ellyn C. Phillips
Board Chair Emeritus
ALS Association Greater Philadelphia Chapter

NINDS Council Member

Aaron Gitler, Ph.D.
Professor, Department of Genetics
Stanford University School of Medicine

 

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