The ALS/MND Patient Fellows Program brings people living with ALS/MND, caregivers, and ALS/MND gene carriers directly into global scientific conversations.
Offered both in person and virtually, the program supports participation in the MND Association’s International Symposium on ALS/MND. Fellows may also choose to register for the International Alliance’s Alliance Meeting and Allied Professionals Forum.
Created on the principle of “Nothing about us without us,” the program ensures lived experience is represented where research, care, and advocacy conversations are taking place.
The Patient Fellows Program allows those impacted by ALS/MND to see the scientific movement taking place behind the scenes, gives us a place in the room where breakthroughs are discussed, and ensures we are part of the conversation. — Patient Fellow, Australia
How to Apply
Applications are open June 3 to July 3.
The program is open to:
- People living with ALS/MND
- Caregivers
- ALS/MND gene carriers
Applications are reviewed by a volunteer selection committee, with priority given to applicants who will benefit from the scientific discourse and who are likely to share their experiences with the broader ALS/MND community.
Why the Program Matters
People affected by ALS/MND bring essential lived experience to conversations about research, care, accessibility, and quality of life. Founded in 2015 by ALS/MND advocate Cathy Collet, the Patient Fellows Program helps ensure those voices are included — not as observers, but as informed participants in the global ALS/MND community.
By supporting research literacy and meaningful engagement, the program helps strengthen connections between researchers, clinicians, and the people most directly impacted by ALS/MND.
Researchers and clinicians consistently describe the program as transformative. Scientists have historically had little contact with people affected by ALS/MND, so the interaction between the research community and Patient Fellows underscores the need for urgency in the drive to turn knowledge into treatments, and generates new ideas and perspectives.
The International Alliance of ALS/MND Associations has supported the program since its inception and continues to expand its reach internationally.
The Patient Fellows Program left me feeling empowered to ask better questions, share accurate information with others, and participate more confidently in conversations about research and care. — Patient Fellow, USA
What Patient Fellows Receive
As a Patient Fellow, you receive:
- Registration for the MND Association’s International Symposium on ALS/MND (in-person or virtual)
- Access to valuable networking with researchers and fellow community members
- Limited support for hotel and travel expenses for in-person attendees during the International Symposium
- Optional virtual registration for the International Alliance’s Alliance Meeting and Allied Professionals Forum (including ALS/MND Connect and the virtual Poster Hall)
Participation extends beyond the event itself. Patient Fellows become part of a supportive community committed to advancing ALS/MND research and advocacy.
Patients are not treated as passive listeners, but as meaningful contributors whose lived experiences truly matter. — Patient Fellow, Iran
Webinar: Highlights from the 2025 Patient Fellows
Highlights from the 2025 Patient Fellows brings together Patient Fellows from the 2025 cohort to share key learnings and reflections from their participation in the International Symposium on ALS/MND. This webinar explores how engaging directly in research discussions shaped participants’ perspectives, deepened their understanding of ALS/MND science, and reinforced the importance of including the voices of those living with ALS/MND in research conversations worldwide.
Support the Program
Donations help expand the reach of the Patient Fellows Program and support greater participation by people living with ALS/MND and caregivers around the world. If you would like to support this work, please consider making a donation. We deeply appreciate your support.
Past Patient Fellows
Whether attending virtually or in person, each patient fellow made valuable contributions to the scientific discourse surrounding ALS/MND. (* denotes in-person attendance)
2025 Fellows
Mandi Bailey, USA*
David Buseck, USA*
Doug Butchart, USA*
Philip Camden, Australia
Xiaohui (Helen) Chen, UK*
Tammy de Witt, South Africa
Brooke Emmerich, USA*
Ronald Faretra, USA
Ingibjorg Gisladottir Lauvland, Norway*
Paige Higgins, Australia
Janet Hough, Australia
Gisli Jonasson, Iceland
Ashley Lee, USA
Stacy Lewin Farber, USA
Julio Neyra, Peru
Mehrdad Salehi, Iran*
Lea Storry, Canada*
Amanda Tam, Canada*
Giulia Valente, Australia*
Barry Werth, Australia
Michael Wilson, USA
2024 Fellows
Masher Ahmad, Pakistan
Mandi Bailey, USA*
Lynn Brielmaier, USA
Sunny Brous, USA*
David Buseck, USA*
Paige Higgins, Australia*
Janet Hough, Australia
Gisli Jonasson, Iceland*
Todd Kelly, USA
Ashlee Lee, USA
Stacy Lewin, MD, USA*
Debbie Lower, USA*
Sandra Mikush, USA
Sue Nelms, UK
Cali Orsulak, Canada*
Kaitlyn Pierce, USA*
Matthew Rocheleau, USA
Leanne Sklavenitis, Australia*
Paula Trefiak, Canada*
Barry Werth, Australia
Rick Zwiep, Canada
2023 Fellows
Lynn Brielmaier, USA
David Buseck, USA*
Katrina Byrd, USA*
Robin Dewey, USA
David Ray Freebury, Canada
Lisa Galante, USA*
Cassandra Haddad, USA*
Gisli Jonasson, Iceland*
Ashley Lee, USA
Dr. Stacy Lewin, USA
Debbie Lower, USA
Rick Nelms, UK*
Dr. Felipe Ocampo, USA
Cali Orsulak, Canada
Kevin Robinson, USA
David Shulman, USA*
Ananthprasad Babji Subba, AUS
Karen Sutton, USA
2022 Fellows
Douglas Butchart, USA
Jeffrey Derby, Canada
Patrick Dolan, USA
Brooke Eby, USA
Barri Falk, USA
Ray Freebury, Canada
Betty Fuchs, USA
Jack Gray, USA
Dr. Alper Kaya, Turkey
Stacy Lewin, USA
Ruth Longhurst, Canada
Roderick Malloy, USA
Cari Meystrik, USA
Rick Nelms, UK
Layne Oliff, USA
Cali Orsulak, Canada
Kevin Robinson, USA
Bruce Rosenbloom, USA
Karen Sutton, USA
Jennie Starkey, UK
Orlando Ruiz, Colombia
Karen Sutton, USA
Paula Trefiak, Canada
Martin Williams, UK
2021 Fellows
Jennifer Barrett Fajardo, USA
Eben Cathey, USA
David Doane, USA
Jack Gray, USA
Cassandra Haddad, USA
Dr. Alper Kaya, Turkey
Steven Kowalski, USA
David LaForest, USA
Norman MacIssac, Canada
Jan Mattingly, Canada
Osiel Mendoza, USA
Cari Meystrik, USA
Layne Oliff, USA
Cali Orsulak, Canada
Juan Reyes, USA
Michael Robinson, USA
Orlando Ruiz, Colombia
Paula Trefiak, Canada
2020 Fellows
Jack Gray, USA
Philip Green, USA
Madeline Kennedy, USA
Steven Kowalski, USA
Anna Maerker, UK
Jan Mattingly, Canada
Kenneth Menkhaus, USA
Cari Meystrek, USA
Michael Robinson, USA
Bert van Hoeijen, Canada
Erin Vierstra, USA
2019 Fellows
Sunny Erasmus, USA*
Philip Green, USA*
Dave Healey, AUS*
Jonathan Jenson, USA*
Gwen Petersen, USA*
2018 Fellows
Keith Smith, UK*
Bruce Virgo, UK*
2017 Fellows
Andrea Lytle Peet, USA*
Meg Macdonald, USA*
Vic Walker, USA*
Sue Pondrom, USA*
Stephen Winthrop, USA*