I recently had the incredible opportunity to immerse myself in a series of enriching conferences in the picturesque city of Basel, Switzerland, as a Patient Fellow. This unique program bridges the gap between those personally affected by ALS and FTD and the broader scientific, clinical, and research communities. It was an experience that not only broadened my professional horizons but also touched me on a deeply personal level.
The journey began with the International Alliance meeting, a gathering of various ALS/FTD organizations from around the globe. Representing End the Legacy as its Vice-Chair, I had the honor of presenting our support programs alongside our executive director. The atmosphere was electric with the collective passion and dedication of everyone present.
The next segment of the conference was the Allied Professionals Forum. This event was a melting pot of diverse professions – from physical and speech therapy to occupational therapy and social work. It was enlightening to witness the exchange of current trends and care considerations, a testament to the collaborative spirit in the fight against these conditions.
The highlight of my trip was undoubtedly the 34th International MND/ALS Symposium. With over 1200 attendees in person and an additional 400 online, the event was a vibrant hub of international research and friendship. One of the most heartwarming moments was witnessing the story of a teenage girl whose life was transformed by a groundbreaking treatment for genetic FUS ALS. It was a poignant reminder of why we do what we do.
Our team also contributed to the symposium with a virtual poster presentation titled “People at Risk of Genetic ALS/FTD Want Pre-Symptomatic Treatment: Results of an Online Survey.” Additionally, we had the privilege of presenting a live poster during the international meeting, focusing on estimating the asymptomatic genetic ALS & FTD community in the United States.
On a personal note, having my father accompany me on this trip was a source of immense joy. It was special to share our original research with him and to reconnect with our cousins in Switzerland. Perhaps the most gratifying aspect of the conference was the feedback from numerous clinicians and researchers. Hearing about the impact our organization has had on their understanding of the genetic at-risk community was both humbling and motivating.
Thank you for allowing me to share this incredible journey with you. It’s experiences like these that fuel our continued commitment to making a difference in the lives of those affected by ALS and FTD.
Click HERE to read more about Cassandra’s personal family story.