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Bringing People with ALS/MND and Caregivers Into The Scientific Discourse

The ALS MND Patient Fellows Symposium Program helps people with ALS MND to participate in the largest annual symposium dedicated to ALS MND research.  The 2023 International Symposium on ALS MND will be held in Basel, Switzerland on December 6-8, 2023.

People diagnosed with ALS or MND  may apply for the program. Caregivers and ALS gene carriers may also apply.

The selection committee has a blinded  evaluation process to try to identify those applicants who will benefit the most from the science and then will share their Symposium experiences and opinions with other people with ALS MND and the research community.

In 2023, applicants may choose to attend the Symposium in person or remotely.

All Fellowships include:

-- Prepaid registration for the Symposium.  Information about the Symposium itself can be found at

-- A valuable experience with other people with ALS and ALS researchers from around the world.

Patient Fellows who are selected for in-person attendance in 2023 will also receive some limited assistance with hotel and travel expenses.

The International Alliance of ALS MND Associations has graciously invited Patient Fellows to all of their meetings prior to the ALS MND Symposium.  These include the Alliance Annual Meeting, their Allied Professionals Forum, and ALS MND Connect.

Click here to learn more about the program from past Patient Fellows Gwen and Phil.

Click here to learn about 2022 Patient Fellow Rick Nelms and his experience.

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Alexis Behan, United States - Online

Lynn Brielmaier, United States - Online

David Buseck, United States - Basel

Katrina Byrd, United States - Basel

Robin Dewey, United States - Online

David Ray Freebury, Canada - Online

Lisa Galante, United States - Basel
Cassandra Haddad, United States - Basel

Gisli Jonasson, Iceland - Basel

Ashley lee, United States - Online

Stacy Lewin, MD, United States - Online

Debbie Lower, United States - Online

Roderick (Rick) Nelms, United Kingdom - Basel

Felipe Ocampo, United States - Online

Cali Orsulak, Canada - Online

Kevin Robinson, United States - Online

David Shulman, United States - Basel

Ananthprasad Babji Subba, Australia - Online

Karen Sutton, United States - Online

2022 Virtual

Olive Brown, Canada
Douglas Butchart, United States
Jeffrey Derby, Canada
Patrick Dolan, United States
Brooke Eby, United States
Barri Falk, United States
Ray Freebury, Canada
Betty Fuchs, United States
Jack Gray, United States
Alper Kaya, Turkey
Stacy Lewin, United States
Ruth Longhurst, Canada
Roderick Malloy, United States
Cari Meystrik, United States
Rick Nelms, UK
Layne Oliff, United States
Cali Orsulak, Canada
Kevin Robinson, United States
Bruce Rosenbloom, United States
Karen Sutton, United States
Jennie Starkey, UK
Orlando Ruiz, Colombia
Karen Sutton, United States
Paula Trefiak, Canada
Martin WIlliams. UK

2021 Virtual

Malcolm Abernethy   Wellington  New Zealand

Jennifer Barrett Fajardo   Honolulu  United States

Eben Cathey   Nashville  United States

David Doane   Bucksport  United States

Jack Gray   Chesterfield  United States

Cassandra Haddad  Lititz  United States

Alper KayaI   ZMIR  Turkey

Steven Kowalski   Boston  United States

David LaForest   Mesa  United States

Norman MacIssac   Montreal  Canada

Jan Mattingly   Mississauga  Canada

Osiel Mendoza   Rohnert Park  United States

Cari Meystrik   Knoxville  United States

Layne Oliff   Plainfield  United States

Cali Orsulak   Winnipeg  Canada

Juan Reyes   Castroville  United States

Michael Robinson   Zion  United States

Orlando Ruiz   Bogota  Colombia

Paula Trefiak   Regina  Canada

2020 Virtual
Seth Christensen - US

Jack Gray - US

Philip Green - US

Madeline Kennedy - US

Steven Kowalski - US

Anna Maerker - UK

Jan Mattingly - Canada
Kenneth Menkhaus - US

Cari Meystrek - US

Michael Robinson - US

Bert van Hoeijen - Canada

Erin Vierstra - US

2019 Perth
Ed Buckingham - US
Sunny Erasmus - US
Philip Green - US
Dave Healey - Australia
Jonathan Jenson - US
Gwen Petersen - US

2018 Glasgow
Sunny Erasmus - US
Keith Smith - UK
Bruce Virgo - UK Scotland

2017 Boston (The First Patient Fellows)
Stephen Finger - US
Andrea Lytle Peet - US
Meg Macdonald - US
Vic Walker - US
Sue Pondrom - US
Stephen Winthrop - US

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Applications for 2023 are open!

Deadline for applications is the end of the day on Friday, July 21.

The application is will be completed online.

To see a pdf preview of the entire application, click here .

Click HERE to apply.

If you are unable to complete an application online, please let us know using the Contact form and we will figure out another way to get your responses.

Click here to learn more about the program from past Patient Fellows Gwen and Phil!

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Selection Team

Sunny Brous
Bruce Virgo
Guðjón Sigurðsson
Gwen Petersen
Aditi Narayan Minkoff
Carol Hamilton
Jessica Mabe
Cathy Collet

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In the past this program had been funded solely with private donations. 

For 2023 we are thankful for a grant from Cytokinetics which will help with program expenses.

We are grateful for the help of the International Alliance of ALS MND Associations.

Special thanks to Dr. Brian Dickie and the MND Association for their consideration and support for the Patient Fellows program.

And we are so grateful for former Patient Fellow Gwen Petersen who has provided valuable program help.

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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 the symposium was to remind me of the breadth of research and global nature of what I'm experiencing personally.

Seth Christensen


Questions?  We're glad to help.

Thanks for submitting!

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