At many drug development and scientific conferences there is an important voice missing – that of the people with the disease that researchers are trying to treat. For many years, this was true of the world’s largest and most prestigious ALS research conferences, the International ALS/MND Symposium. However, this began to change in 2017 thanks to the efforts of several ALS advocates who founded the ALS/MND Symposium Patient Fellows program.
To make sure the voices of people with ALS are represented in the scientific discourse, the Patient Fellows program provides resources and assistance to people affected by the disease to participate in the event. The goal is to give people living with ALS an opportunity to learn more about the state of ALS research, as well as allowing the scientists at the symposium to interact directly with the people they are working to help.
On January 25, 2024, the ALS Therapy Development Institute (ALS TDI) invited four fellows who attended the 2023 symposium in Basel, Switzerland, both in person and online, to present about their experience at a virtual town hall.
History and Purpose of the Program
To begin, Dr. Nadia Sethi, ALS TDI’s Director of Community Engagement, delivered a presentation prepared by Cathy Collet, who was unable to attend. Cathy is a longtime ALS advocate and one of the driving forces behind the founding of the program. Her presentation emphasized how the Patient Fellows program was meant to embody the philosophy of “nothing about us without us.”
She also covered how the Patient Fellows program works:
- Every year, people with ALS, caregivers, and people from genetic ALS families are invited to apply to attend the symposium.
- These applications are then reviewed by a panel of judges, made up of at least half people with ALS, as well as advocates and others from the ALS community.
- In 2023, 19 fellows were selected to attend the symposium, both in person and online. All associated costs for travel and attendance are covered by the patient fellows program.
- Since its founding in 2017, the organizers of the symposium have fully embraced the program. Fellows are allowed access to many of the meetings and presentations at the event and can directly ask questions of presenting researchers and scientists. Since 2019, the symposium has also waived any registration fees for patient fellows.
- Applications for the 2024 ALS/MND Symposium Patient Fellows Program will open in June. Those interested in applying can find more information at https://www.alspatientfellows.org/
Experiences from the 2023 Patient Fellows
Following Dr. Sethi’s presentation, four fellows from the 2023 class shared their takeaways from their attendance at the International Symposium on ALS/MND:
David Shulman, who was diagnosed with ALS in May, 2023, shared his perspective as a person living with the disease who attended the symposium in person.
- He described some of the encouraging news about research into ALS treatments that he learned and cited specific take-aways, including:
- That ALS is stoppable.
- That game-changing breakthroughs are happening all around the world, all the time.
- That our understanding of genetics and ALS is constantly evolving.
- That neurodegenerative diseases are very closely related.
- That gene therapies may someday extend to sporadic ALS.
- That clinical trial results are analyzed, discussed and learned-from, even when they fail.
- He also shared how he made new connections and friends with people from across the global ALS community, and cemented his belief that patients have an important role to play in curing ALS.
Cassandra Haddad, who is an SOD1 gene carrier, presented her experience as someone from a genetic ALS family.
- In particular, she emphasized the progress made in treating some forms of genetic ALS in recent years, and shared her hope that learnings from these advances could eventually benefit all people with the disease.
Lynn Brielmaier, who is living with ALS, provided the perspective of a remote participant. Lynn attended the symposium virtually from his home in Houston, Texas using an eye-gaze computer.
- His presentation covered many of the challenges of remote participation, including technical problems and difficulties getting his questions answered in meeting chats.
- He then provided constructive suggestions for how the symposium could improve the remote experience. However, he also emphasized that, despite the difficulties, he was honored to attend the symposium as a fellow and was able to view many interesting and inspirational presentations.
Cali Orsulak is an advocate and former caregiver for her husband, who passed away from ALS in 2023.
- Her presentation focused on providing information for those considering participating in the program in the future.
- She included a list of reasons why people in the ALS community should consider applying and shared her advice on how to best experience the conference as an in-person attendee.
- Cali also shared how she believes her experience will shape her future advocacy efforts, including:
- Providing her with education to make her a more confident advocate
- Helping her form new relationships with peers and researchers.
- Providing inspiration as she learned about promising new areas of research.
To hear more about these presenters' experiences as International ALS/MND Symposium Patient Fellows, you can watch a recording of the ALS TDI Town Hall.
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