The ALS/MND Symposium is the largest gathering of researchers studying amyotrophic lateral sclerosis (ALS) in the world. The conference, organized by the UK’s Motor Neurone Disease Association (MNDA) in partnership with International Alliance of ALS/MND Associations, welcomes scientists, academics, and drug development researchers from around the world to share the latest research to understand and treat the disease. It was founded 32 years ago in order to foster global collaboration between ALS researchers and encourage the timely sharing of new discoveries.
However, no gathering of the leaders in the ALS research space would be complete without the people with the deepest investment in finding treatments for the disease – those living with ALS, as well as their caregivers and families. In order to make sure these voices are represented in the scientific discourse, the ALS/MND Symposium Patient Fellows program provides resources and assistance to people affected by the disease to participate in the event. The goal is to provide people living with ALS an opportunity to learn more about the state of ALS research, as well as allowing the scientist at the symposium to interact directly with the people they are working to help.
Since 2017, a number of people living with ALS have been selected to attend the symposium as patient fellows each year. They are provided with prepaid registration to the event, which is normally £60 or roughly $84, as well as access to special programs throughout the 3-day symposium. In past years, the fellows also have been provided with travel assistance to reach the event, which is normally held in different city every annually. However, in 2020 the event moved to a fully online program because of the Covid-19 pandemic, and will again be held virtually in 2021.
“The ALS/MND Symposium is the greatest opportunity to see science in action, said Sunny Brous of her experience as a patient fellow in 2019. “I’ve been fortunate enough to participate in the past 3 events and the inspiration, connections, and global awareness in the collective fight against this disease is unmatched. This program puts faces to the work being done and adds fuel to the fire for everyone involved.”
ALS/MND is now accepting applications to join fellowship program at the 2021 ALS/MND Symposium on December 8-10, 2021. People living with ALS who are interested in learning more about the science behind ALS research, and sharing that information with the community, are encourage to apply. This year, two special fellowships are also being reserved for a caregiver and a non-symptomatic gene carrier.
“As people living with ALS, we are the most important stakeholder in ALS research,” says Phil Green, who was a Patient Fellow at last year’s virtual symposium. “The Patient Fellows Program gives us the opportunity to hear firsthand about promising scientific discoveries in our disease.”
For more information and to apply, click here. You can also watch the video below to see two past fellows describe their experience.
ALSPatientFellows20210712 from M. C. C. on Vimeo.
To learn more about the ALS Therapy Development Institute’s research to end ALS, click here.