Research Guide Partners

We would like to thank the following ALS organizations for supporting the development and ongoing evolution of this ALS Research Guide.
In addition to providing multidisciplinary care and support at its MDA/ALS Center of Hope at Temple University, ALS Hope Foundation is focused on making a difference to people living with ALS through care, research, and education. The foundation conducts basic science and clinical research, supports the development of patient-centered research, has a lab devoted to the development of brain computer interfaces, and partners with organizations to provide educational programming. Learn more
In addition to providing customized, community-based care services to families, the ALS Network advocates for policies that champion research and directs a global program to accelerate the discovery of prevention strategies, treatments, and cures. Key initiatives include funding cutting-edge science and convening world-renowned experts at its annual ALS Research Summit. Learn more
The ALS Therapy Development Institute (ALS TDI) is the world's most comprehensive drug discovery institute focused solely on ending ALS. It conducts the rigorous preclinical, clinical, and translational research needed to invent ALS treatments and advance them into clinical trials. ALS TDI also openly shares data from its ARC Study with the global research community. Learn more
ALS United is a collaborative network of 15 independent, locally-governed nonprofit organizations dedicated to serving approximately half of the U.S. ALS population. ALS United funds a diverse portfolio of innovative research initiatives, including AMP ALS, the Packard Center, the ALS Research Innovation Initiative, ALS Research Fellowships, and NEALS. Learn more
Founded by Augie Nieto, Augie’s Quest to Cure ALS makes strategic investments that drive progress for ALS. In 2025, Augie’s Quest provided over $5 million to expand ALS TDI’s research facilities and funded the Champion Insights program, the AQ Translational Research Center, Duke’s microbiome study, and UC Irvine’s ALS clinic. Learn more
We would like to thank the Network of Excellence for ALS (NEALS) for coordinating our video interviews with the following experts:

  • Dr. Jinsy Andrews, NYU Langone Health
  • Dr. Richard Bedlack, Duke ALS Clinic
  • Dr. James Berry, Sean M. Healey & AMG Center for ALS at Mass General
  • Dr. Merit Cudkowicz, Sean M. Healey & AMG Center for ALS at Mass General
  • Dr. Timothy Miller, Washington University School of Medicine in St. Louis
  • Dr. Jeffrey Rothstein, Robert Packard Center for ALS at Johns Hopkins
  • Dr. Jeremy Shefner, Barrow Neurological Institute

We thank these researchers for sharing their expertise with the ALS community.

Research Guide Collaborators

The following experts volunteered their time to provide input and/or feedback on guide content. We greatly appreciate their help and could not have created this guide without them.
  • Dr. Senda Ajroud-Driss, Northwestern Medicine
  • Andrea Pauls Backman, MBA, Former Caregiver and Founder of ALS Strategy Consulting
  • Mandi Bailey, ALS Advocate and Co-Lead of the Veteran ALS Action Committee
  • Dr. Robert Bowser, Barrow Neurological Institute
  • Jill Brattain, Former Caregiver and Co-Lead of the Veteran ALS Action Committee
  • Allison Bulat, ALS Caregiver and Vice President of Ecosystem Innovation at ALS Network
  • David Buseck, ALS Network Board Member living with ALS
  • Judi Carey, RN, ALS Research Access Nurse, Mass General
  • Mara Dolan, ALS Caregiver and CEO of GeoALS
  • Ron Faretra, Veteran with ALS
  • Dr. Christina Fournier, Emory ALS Center
  • John Furey, Senior Clinical Research Associate, Temple University
  • Cassandra Haddad, CRNP and ALS Advocate
  • Kathleen Hatala, RN, BSN, Clinical Research Nurse, Temple University
  • Dr. Terry Heiman-Patterson, Temple University
  • Wendy Hendrickson, ALS Warrior, Advocate, and Founder of Wendy’s Wish 911
  • Diane Hoey, ALS Advocate
  • Ileana Howard, MD, Associate Director of Neurology for ALS, Veterans Health Administration
  • I AM ALS Clinical Trials Team
  • Todd Kelly, Advocate living with ALS
  • Stacy Lewin Farber, MD, ALS Warrior & Advocate
  • Layne Oliff, ALS Research Advocate (1959-2025)
  • Dr. Lyle Ostrow, Temple University
  • Alan Premasiri, Director of Clinical Research Operations, ALS TDI
  • Jennifer Roggenbuck, Genetic Counselor, The Ohio State University
  • Emma Schmidt, Clinical Operations Manager, Northwestern University
  • Randy Viscarra, Veteran with ALS

ALS RESEARCH GUIDE

Partners and Collaborators