• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
  • Email
  • Facebook
  • LinkedIn
  • Twitter
  • YouTube

International Alliance of ALS/MND Associations

  • Members' Login
  • Contact
  • Join the Alliance
  • Donate
  • What is ALS/MND
  • Find a Member Association
  • Support for PALS & CALS
    • Fundamental Rights for People with ALS/MND and Caregivers
    • Research
      • Voice Preservation
      • Open Science
      • Expanded Access
      • Understanding ALS/MND Research
      • Improving Regulatory Pathways
      • Right to Try
      • US FDA Orphan Drug Designation
      • Unproven (Off-Label) Treatments
      • Open Label Extension
    • Advocacy
      • Advocacy Toolkit
      • Emergency Preparedness Toolkit
      • Equitable Access to Therapies
      • Recommendations for Trial Sponsors
    • Clinical Care
      • Genetic Counselling & Testing
      • Mental Health Support
      • Nursing and Symptom Management
      • Nutrition and Swallowing
      • Occupational Therapy and Activities of Daily Living
      • Physiotherapy and Mobility
      • Respiratory Care
      • Speech Therapy and Communication
      • Support for Family & Caregivers
      • Technology
      • Global Clinic Locator
    • Drugs in Development
      • AB Science – Masitinib
      • BrainStorm Cell Therapeutics – NurOwn
      • Clene Nanomedicine – CNM-Au8
      • Collaborative Medicinal Development – CuATSM
      • ILB – Tikomed
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Neuronata-R/Lenzumestrocel
      • NeuroSense – PrimeC
      • Neuvivo – NP001
      • Prilenia Therapeutics – Pridopidine
      • T Regulatory Cell Therapies
      • SOD1 Therapies & Trials
    • Approved Drugs
      • Neudexta
      • Radicava/Edaravone
      • Riluzole/Tiglutik
      • Tofersen/Qalsody
    • Drugs No Longer in Development
      • Amylyx – AMX0035
      • Collaborative Medicinal Development – CuATSM
      • Cytokinetics – Reldesemtiv
      • Orphazyme – Arimoclomol
      • TUDCA Trial
  • Support for Health Professionals
    • Breaking the News in ALS/MND
  • Events/Programs
    • Calendar of Events/Programs
    • Alliance Meeting
    • Allied Professionals Forum
    • Alliance Webinars
    • ALS/MND Connect
    • Global Day
    • March of Faces
    • Patient Fellows Program
    • International Symposium
  • About
    • Who We Are
    • Board of Trustees
    • Advisory Councils/Committees
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Innovation and Technology Council
      • Advocacy and Public Policy Forum
      • Research Directors Forum
      • Governance Committee
      • Finance Committee
    • Staff
    • History
    • Archives
      • Newsletters
      • Meetings
    • Awards
      • Student Innovation Award
      • Forbes Norris Award
      • Humanitarian Award
      • Allied Health Professional Award
  • Members
    • Member Registration
    • Forgot Password

Patient Fellows Program

Welcome to the ALS/MND Patient Fellows Program, where we empower people living with ALS/MND and their caregivers to actively participate in global scientific conversations. By bridging the gap between the community and researchers, we foster progress towards effective treatments and ultimately a cure for ALS/MND.

How to Apply

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 2025 application period opens on June 1 and closes on June 30. Please check back for updates or watch our newsletter for details closer to June. We will notify all applicants of our decisions by August 31. 

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 Benefits

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 conferences  

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 and Allied Professionals Forum will take place in Toronto, Canada, late November – early December. 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. Exact dates and details coming soon.

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

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Jon Newsome, USA

    Jon Newsome, USA

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Roy

    Roy
    roy

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Timmy, ALS Liga

    Timmy, ALS Liga

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

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

  • Mauril Belanger

    Mauril Belanger

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Steve

    Steve

  • Ali Var, Turkey

    Ali Var, Turkey

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

    João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

  • Peng Yi-Wen

    Peng Yi-Wen

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Hollister

    Hollister
    hollister

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

  • Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

    Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

    Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Jose Espinosa, Argentina

    Jose Espinosa, Argentina

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Daniel Hare

    Daniel Hare

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

Learn more about the March of Faces

Latest Tweets

  • Just now

Footer

Subscribe to our Bi-Monthly Newsletter

Sign up to receive updates and to hear what's going on in the International Alliance of ALS/MND Associations.

"*" indicates required fields

 
This field is for validation purposes and should be left unchanged.
  • Email
  • Facebook
  • LinkedIn
  • Twitter
  • YouTube
Return to top of page

Contact | Disclaimer | Privacy Notice & Cookies | Sitemap

Copyright © 2025 The International Alliance of ALS/MND Associations. All rights reserved.


Registered in England: Charity Number 1079504 · Site built by graphics.coop · Powered by WordPress · Members' login