Nothing About Us Without Us



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 2019 International Symposium on ALS MND will be held 4-6 December 2019 in Perth, Australia.

People diagnosed with ALS or MND  may apply for the program between July 15 and August 19, 2019.

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.

For 2019, we anticipate that we will have funding for up to five Patient Fellows.

The Fellowship includes:

-- Prepaid registration at the Symposium in Perth for the person with ALS and one caregiver.  Information about the Symposium itself can be found at

-- Basic hotel accommodation for five nights starting December 2.

-- Possible stipend of up to $1000 to help with travel expense (provided after the symposium).

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



Be sure to apply before the end of the day on Monday, August 19.

The selection committee will score and evaluate applications by mid-September.

Those selected as Patient Fellows will be notified by the end of September.

The program administrator from ALSTDI will work with Patient Fellows right away to secure accommodations at a Patient Fellows hotel in Perth.

Patient Fellows will be included in emailings and conference calls to prepare for the experience.

Patient Fellows need to make their own travel arrangements to get to Perth.

There will be an informal group dinner the evening of December 3.

Patient Fellows will attend the Symposium on December 4-6.

After the Symposium, Patient Fellows will submit their written or video or audio perspectives on the science and the experience which will be published on this website.

Patient Fellows receiving travel stipends will receive payments by the end of December.



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



Applications will be open from July 15 through the end of the day on August 19. 

The application is completed online. 

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.

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

Ready to apply?  We hope so!
Please come back next year to apply for the 2020 program.


Selection Committee

Gabrielle Bellitti
Carol Birks
Cathy Collet
Andrea Lytle Peet
Guðjón Sigurðsson
Bruce Virgo
Paul Wicks



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

We are grateful for the ALS MND organizations that are stepping up in 2019 with generous support to add to the private donations.

We have a lean budget and appreciate those who are providing an important opportunity for those with ALS and for the researchers who can learn from them.

We thank ALSTDI and MND Australia for their immense help with administration and logistics.

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

Thanks to the ALS organizations who are providing special support in 2019:

MND Australia
MND Victoria
MND Iceland
International Alliance of ALS MND Associations



Questions?  We're glad to help.


©2019 by ALS MND Symposium Patient Fellows Program.