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International Alliance of ALS/MND Associations

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Patient Fellows Program

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 Applications

The Patient Fellows Program is open to people diagnosed with ALS/MND, caregivers and ALS/MND gene carriers. A volunteer committee selects applicants who will benefit most from the scientific discourse and who will share their experiences with the wider community.

The application period for 2025 is now closed. Thank you to all those who applied. 

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.

https://www.als-mnd.org/wp-content/uploads/2024/05/Alliance-Photobook.mp4

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*

 

 

 

 

 

Primary Sidebar

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

  • Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

    Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

  • Peng Yi-Wen

    Peng Yi-Wen

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Michael Lee, Australia

    Michael Lee, Australia

  • Kirsten Harley,  Diagnosed 2013,  Australia

    Kirsten Harley, Diagnosed 2013, Australia

  • Chen Chun-Chin

    Chen Chun-Chin

  • Norm MacIsaac,  ALS Society of Canada,  ALS Society of Quebec,  Diagnosed 2014

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014

  • Ali Var, Turkey

    Ali Var, Turkey

  • Angie Bordaen, Diagnosed 2014,  ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Cath Muir

    Cath Muir
    Cath

  • Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

    Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

  • Dr Shelly Hoover

    Dr Shelly Hoover

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Fabio Carvalho

    Fabio Carvalho

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • March of Faces Photo Submission_OLGA_ELA ARGENTINA

    March of Faces Photo Submission_OLGA_ELA ARGENTINA

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Osiel Mendoza, Diagnosed 2016 ,  ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 , ALS Therapy Development Institute, USA

  • Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Roy

    Roy
    roy

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Willi Klein

    Willi Klein

  • Paul Launer, USA

    Paul Launer, USA

  • Dad

    Dad

  • 727747090571358167

    727747090571358167

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

  • Ian Roberts

    Ian Roberts

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • 83

    83

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

    Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

  • Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

    Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

  • Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

    Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
    ismail_gokcek_alsmnd_tr

  • Horacio Fritzer, Argentina

    Horacio Fritzer, Argentina

Learn more about the March of Faces

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