The committee and project staff extend their gratitude to the many people and organizations who were critical in supporting and informing the committee’s work. This study was sponsored by the National Institutes of Health (NIH) and, in particular, was supported by the National Institute of Neurological Diseases and Stroke (NINDS). The committee thanks NIH and NINDS for their support, and the committee thanks Congress for initiating this important study.

People with amyotrophic lateral sclerosis (ALS), their caregivers and family members, representatives of ALS nonprofit organizations, researchers, and clinicians graciously offered their expertise and perspectives throughout the study process. This information was not only useful but also courageous, heartfelt, and inspiring. The committee heard from many people in different ways throughout the study and would like to extend its appreciation to each.

Over the course of its meetings, the committee heard from many people who shared their stories about ALS. This allowed the committee to center their work in the real-world lived experiences of those living with and affected by this disease, as well as to gain valuable insight as to the challenges and opportunities faced by those who fight against ALS in their daily lives, at labs or clinics, and alongside countless community organizations. The committee thanks the many participants in its public sessions: Lori Banker-Horner, James Berry, Sunny Brous, Katrina Byrd, Nora Capocci, Blair Casey, Jim Clingman, Sylvia Clingman, Cathy Collet, Norah Crossnohere, Penny Dacks, Dan Doctoroff, Sonya Elling, Ron Faretra, Albert Faro, Sarah Fontaine, Renee Golden, John Hansen-Flaschen, Bob Hebron, Terry Heiman-Patterson, Colleen Hoarty, Collin Hovinga, Justin Ichida, Vanessa Jackson, Asia Jami, Desiree Galvez Kessler, Lisa Latts, Ashley Lee, Melanie Lendnal, Joanne Lynn, Paul Mehta, Paul Melmeyer, Indu Navar, Siobhan Pandya, Juliet Pierce, Terri Postma, Kristin Rankin, Julian Rodriguez, Bruce Rosenblum, Paul Seifert, Jean Swidler, Neil Thakur, Fernando Vieira, and William Woods.

The committee also benefited from the perspectives of six individuals appointed as lived experience consultants (volunteers). The lived experience consultants provided reflections on some excerpts of draft report text between January and March 2024. The committee expresses its gratitude to Michael Cosgray, Desiree Galvez Kessler, Bernadine A. Okeke, Ann Oliff, Kristin Rankin, and Julian (Jules) Rodriguez for their participation in the study process as lived experience consultants.

The committee also thanks Sarah Lunsford, who served as a consultant to organize many of these public engagement opportunities.

The staff of the National Academies of Sciences, Engineering, and Medicine contributed in many ways throughout the study process. The committee extends its sincerest gratitude to the study team for their hard work and dedication throughout this project: Rebecca A. English, Lyle Carrera, and Ashley Bologna. The committee is grateful for the many staff within the Health and Medicine Division who provided support for the project. Special thanks are extended to Christie Bell, senior financial business partner; Lori Brenig, editorial projects coordinator; and Mark Goodin for his editorial assistance in preparing the report.