December 5–8, 2025 | In-person and virtual
The ALS/MND Patient Fellows Program empowers people living with ALS/MND and their caregivers to take part in global scientific conversations. By bridging the gap between the community and researchers, we help foster progress toward effective treatments and, ultimately, a cure.
This program supports participation in the MND Association’s International Symposium on ALS/MND, which will take place in-person in San Diego, USA, with a virtual option. In addition, Patient Fellows can access optional virtual registration for the International Alliance’s Alliance Meeting and Allied Professionals Forum, which are taking place separately and virtually from Toronto, Canada. This reflects a change from previous years, when all events were typically held in the same location. More details are below.
2025 Participants
We would like to welcome this year’s Patient Fellows:
- In-Person: Mandi Bailey, USA; David Buseck, USA; Doug Butchart, USA; Xiaohui (Helen) Chen, UK; Brooke Emmerich, USA; Ingibjorg Gisladottir Lauvland, Norway; Mehrdad Salehi, Iran; Lea Storry, Canada; Amanda Tam, Canada; and Giulia Valente, Australia.
- Virtual: Siti Nur Sabrina Binte Anis, Singapore; Philip Camden, Australia; Tammy de Witt, South Africa; Ronald Faretra, USA; Paige Higgins, Australia; Janet Hough, Australia; Gisli Jonasson, Iceland; Ashley Lee, USA; Stacy Lewin Farber, USA; Julio Neyra, Peru; Barry Werth, Australia; and Michael Wilson, USA
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.
About the Program
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 new leader of the program in 2024, 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
But the benefits extend beyond the event itself. You’ll become part of a supportive community dedicated to driving progress in 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
2025 Conference Details
The International Symposium on ALS/MND is organized by the MND Association. In 2025, it will take place in San Diego, California, USA, and virtually from December 5 to 7. It gathers leading researchers, clinicians, and advocates from around the world to share groundbreaking discoveries and collaborate on innovative solutions. For information on the Symposium, visit the International Symposium on ALS/MND website.
The Alliance’s 2025 Alliance Meeting (November 29-30) and Allied Professionals Forum (December 1-2) will take place in Toronto, Canada. As part of the Patient Fellows Program, participants will have the option to attend virtually. The Meeting is the place where member associations can meet and share advances in supporting people living with ALS/MND. The Forum brings together healthcare professionals working in the field of ALS/MND for a truly global conversation on the challenges and advancements in ALS/MND care.
If you have any questions, please contact us at alliance@als-mnd.org.
Donate to the Work of the Alliance
If you would like to join us in expanding our reach to more people, please donate. We deeply appreciate your support.
Past Patient Fellows
Get inspired by all our past Patient Fellows who participated in the program. Whether attending virtually or in person, each patient fellow made valuable contributions to the scientific discourse surrounding ALS/MND. (* denotes in-person attendance)
| 2024 Fellows | 2023 Fellows | 2022 Fellows | 2021 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
|
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 |
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 |
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
| 2020 Fellows | 2019 Fellows | 2018 Fellows | 2017 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 |
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* |