The National Academies of Sciences, Engineering, and Medicine (NAS) is undertaking a study into accelerating the development of treatments and improving quality of life for people with ALS.
This is a huge win for the community. The ALS Association led an effort to get Congress to direct NAS to undertake a study on ALS and also fought for $1 million to fund the study.
The NAS will focus on making ALS a livable disease within a decade, which aligns with our strategy to transform ALS quickly. This study will help us better marshal external resources to support that goal.
We will continue to play a major role in the NAS study by ensuring that people living with ALS and their families have opportunities to provide input to NAS on what matters most, identifying experts for the NAS study and advocating for key issues on which the NAS should focus.
An expert committee, selected by the NAS, will develop a report with recommendations for key actions that federal agencies, the pharmaceutical industry, and nongovernmental organizations can take, including identifying opportunities for collaboration.
The NAS Committee will study 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.
In short, this study is a big deal that will help us in our effort to make ALS livable until we cure it by helping align the science community toward our goal.
The last National Academies study, done is 2006, focused on possible connections between ALS and military services. This study was incredibly powerful and resulted in the Veteran’s Administration determination that ALS was a service related disease in 2008. As such, veterans with ALS and their families are eligible for an array of medical and social service benefits.
This National Academies report will be equally powerful in terms of spearheading changes in research, care services, health care and much more.