The National Academies of Science, Engineering, and Medicine (NASEM) has appointed Eva Feldman, M.D., Ph.D., Russell N. DeJong Professor of Neurology and the University of Michigan James W. Albers Distinguished University Professor. to serve on a new committee tasked with the study: "Amyotrophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life." Operating under the 1863 Congressional charter of the National Academy of Sciences, the National Academies are private, nonprofit institutions that work outside of government to provide objective advice on matters of science, technology, and health.
A description of the committee from the NASEM:
The ad hoc committee of the National Academies of Sciences, Engineering, and Medicine will conduct a study to identify and recommend key actions for the public, private, and nonprofit sectors to undertake to make amyotrophic lateral sclerosis (ALS) a livable disease within a decade.
The committee will consider the landscape of ALS therapeutic development, care, services, and supports, such as:
- pathways for developing more effective and meaningful treatments and a cure
- interventions to reduce and prevent the progression and complications of ALS
- challenges and obstacles for public, private, and nonprofit sectors to overcome to make ALS a livable disease within a decade
- the type and range of care and services people with ALS and their families need and how to ensure they receive comprehensive, quality care
- what care, services, and preventive measures people at-risk of ALS need
- how to improve the quality of life, health, and well-being of affected individuals and families.
The committee’s work will consider equity issues across the landscape and build on priorities identified in the National Institute of Neurological Disorders and Stroke’s ALS Strategic Plan, the Food and Drug Administration’s Action Plan for Rare Neurodegenerative Diseases including Amyotrophic Lateral Sclerosis, and additional existing analyses and expert and public input. The committee will develop a report with its recommendations for key actions that federal agencies, the pharmaceutical industry, and nongovernmental organizations can take, including identifying opportunities for collaboration.
The National Academies’ “Amyotrophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life” study will...