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 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 gives us a place in the room where breakthroughs are discussed, and ensures we are part of the conversation.”
— Patient Fellow, Australia
2026 Patient Fellows
Applications for the 2026 Patient Fellows Program are now closed. Thank you to everyone who applied.
Congratulations to the 22 Fellows selected for the 2026 program. Meet this year’s Fellows in the list below.
Who Can Apply
The program is open to:
- People living with ALS/MND
- Caregivers
- ALS/MND gene carriers
Applications are reviewed by a volunteer selection committee. Priority is given to applicants who will benefit from the scientific discussions and who are likely to share what they learn with the broader ALS/MND community.
What Patient Fellows Receive
Registration for the MND Association’s International Symposium on ALS/MND, either in person or virtually.
Opportunities to connect with researchers and fellow members of the ALS/MND community.
Limited support for hotel and travel expenses for in-person attendees during the International Symposium.
Optional registration for the 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 global community committed to advancing ALS/MND research and advocacy.
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 perspectives are represented where important decisions and discoveries are taking shape.
By supporting research literacy and meaningful engagement, the program strengthens connections between researchers, clinicians, and the people most directly impacted by ALS/MND. These interactions can bring new perspectives to scientific discussions while helping Fellows build their knowledge and confidence.
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
“Patients are not treated as passive listeners, but as meaningful contributors whose lived experiences truly matter.”
— Patient Fellow, Iran
Highlights from the 2025 Patient Fellows
Hear directly from members of the 2025 cohort about their key learnings and reflections from participating in the International Symposium on ALS/MND. The webinar explores how engaging in research discussions shaped their perspectives, deepened their understanding of ALS/MND science, and reinforced the importance of lived experience in research conversations.
Support the Patient Fellows 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.
Patient Fellows by Year
Since the program began, Patient Fellows from around the world have brought their experiences and perspectives to global ALS/MND research conversations. An asterisk (*) indicates in-person attendance.
2026 Fellows
Yentli Albrecht, USA*
Gurpreet Bansal, UK*
Maryna Borodina, Ireland/Ukraine
Josie Caruso, Australia
E. Alexander Cooper, Canada*
Anne-Julie François, France
Aaron Hinttala, Australia*
Aspa Karampela, Greece*
Dr. Alper Kaya, Türkiye
Zeynep Kusku Kiraz, Türkiye
Philip Langat, Kenya*
Cynthia Mendes, Brazil*
Harlina Binti Mohd, Malaysia*
Alastair Moule, UK
Sylvia Nzambu, Kenya
Jette Odgaard Villemoes, Denmark
Paola Prada, Colombia*
Dr. Hemangi Sane, India
Kenneth Sanderson, Canada
Anna Sjökvist, Sweden
Joseph Skewes, Australia
Bernie Zipprich, USA*
2025 Fellows
Siti Nur Sabrina Binte Anis, Singapore
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
Tre Archibald, Canada
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
Alexis Behan, USA
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
Olive Brown, Canada
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, Türkiye
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
Orlando Ruiz, Colombia
Jennie Starkey, UK
Karen Sutton, USA
Paula Trefiak, Canada
Martin Williams, UK
2021 Fellows
Malcolm Abernethy, NZ
Jennifer Barrett Fajardo, USA
Eben Cathey, USA
David Doane, USA
Jack Gray, USA
Cassandra Haddad, USA
Dr. Alper Kaya, Türkiye
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
Seth Christensen, USA
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
Ed Buckingham, USA*
Sunny Erasmus, USA*
Philip Green, USA*
Dave Healey, AUS*
Jonathan Jenson, USA*
Gwen Petersen, USA*
2018 Fellows
Sunny Erasmus, USA*
Keith Smith, UK*
Bruce Virgo, UK*
2017 Fellows
Stephen Finger, USA*
Andrea Lytle Peet, USA*
Meg Macdonald, USA*
Vic Walker, USA*
Sue Pondrom, USA*
Stephen Winthrop, USA*