The ALS/MND Patient Fellows Program is offered in person and virtually and is open to people living with ALS/MND, caregivers, and ALS/MND gene carriers.
The program focuses on bringing lived experience into global ALS/MND scientific conversations, with Patient Fellows participating 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.
The Patient Fellows Program is open to people diagnosed with ALS/MND, caregivers and ALS/MND gene carriers. A volunteer committee selected applicants who will benefit most from the scientific discourse and who will share their experiences with the wider community.
Program Background
The Patient Fellows Program was created in 2015. Its mission is “Bringing People with ALS/MND and Caregivers into the Scientific Discourse.” It was first implemented in 2017 to help six people living with ALS/MND and their caregivers attend the MND Association’s International Research Symposium in Boston.
‘Nothing about us without us.’ That’s the mantra of the Patient Fellows program, and honestly, it’s simply the right thing to do, especially in important scientific discussions.
– Cathy Collet, founder of the Patient Fellows Program
The outcomes for both the patient fellows and the research community were fantastic: the Patient Fellows asked meaningful questions throughout the event and continued to engage with the scientific community on an ongoing basis, which ensured that patient impact and support were considered in various initiatives. This has been the outcome every year since, and, in fact, many of our industry initiatives, like patient advocacy boards, are often populated with those whose first interaction with our community is through the program.
The Patient Fellows Program adds huge value to the Symposium. Most scientists have little contact with ALS/MND patients and caregivers, so the interaction between researchers and Patient Fellows adds an essential dimension to the meeting, generating new ideas and perspectives, and reminding the research community of the need for urgency and focus in the drive to turn knowledge into treatments.
– Dr. Brian Dickie, Director of Research Development, MND Association
The Alliance has supported the Patient Fellows Program since its inception because we fundamentally believe that people with ALS/MND and their caregivers must be part of the discourse. As the program’s current leader, the Alliance hopes to expand the program’s reach, supporting local and international ALS/MND communities.
Program Details
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.
For me, living in an ALS body that’s increasingly isolated, I start or tend to think of my experience as somehow mine alone. The greatest personal benefit of attending the Symposium was to remind me of the breadth of research and global nature of what I’m experiencing personally.
– Seth Christensen, 2020 Patient Fellow
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 Work of the Alliance
If you would like to help expand the reach of the Patient Fellows Program and support greater participation by people living with ALS/MND and their caregivers, 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 | 2024 Fellows | 2023 Fellows | 2022 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 |
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
|
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 |
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, 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 |
The value of the Program in terms of what it brings to PALS and CALS is probably immeasurable. It provides awareness, hope, encouragement and opportunities to help our community in many ways. Equally as important, it enables researchers and non-clinical medical people to meet and discuss matters and experiences with PALS and CALS, something that many lab-based folks rarely have the chance to do.
– Bruce Virgo, 2018 Patient Fellow
| 2021 Fellows | 2020 Fellows | 2019 Fellows | 2018 Fellows | 2017 Fellows |
| Malcolm Abernethy, NZ 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 |
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 |
Ed Buckingham, USA* Sunny Erasmus, USA* Philip Green, USA* Dave Healey, AUS* Jonathan Jenson, USA* Gwen Petersen, USA* |
Sunny Erasmus, USA* Keith Smith, UK* Bruce Virgo, UK* |
Stephen Finger, USA* Andrea Lytle Peet, USA* Meg Macdonald, USA* Vic Walker, USA* Sue Pondrom, USA* Stephen Winthrop, USA* |