The ALS Center hosted its inaugural ALS Symposium on August 3, 2024, at the WashU Medical School campus. About 100 people attended in person and about 20 people attended virtually. The Symposium was designed for participants in the Center’s clinical research studies and their caregivers and featured a full morning of sessions of interest to the ALS community as well as a lunch reception.
Dr. Miller opened the day with a keynote presentation in which he explained the overall structure of the ALS Center, the research taking place, and the medical resources available to patients. The Center comprises three areas: translational research, clinical trials, and clinical care. Patients of the Center have access to a range of providers that include not only a physician but also a nurse practitioner, respiratory therapist, physical therapist, occupational therapist, sleep specialist, speech language pathologist, genetic counselor, dietician, wheelchair specialist and social worker. Dr. Miller also spoke about the clinical research studies taking place at WashU and explained the data from the Phase 3 clinical trial led by Dr. Miller and WashU that led to the FDA approval of tofersen for SOD1-related ALS.
Amber Malcolm and Kelly McCoy Gross led a session about the multidisciplinary care resources available at the clinic. Physical therapist Beth Hughes, occupational therapist Joan Scacciaferro, and speech language pathologist Carrie Mosley spoke more specifically about the resources they can help provide, including adaptive, mobility and safety equipment and tools to support speech and communication.
The highlight of the day was a panel discussion by five individuals – three who are living with ALS themselves and two who are caregivers. They generously shared their perspectives on what it is like to live with the disease on a day-to-day basis. They answered questions from the audience and offered suggestions for improved ALS care and caregiving.
The last session of the day was an open Question & Answer session with ALS Center directors Dr. Miller and Dr. Bucelli, along with Dr. Smith, Dr. Ly and Amber Malcolm, who fielded questions from the audience. Follow our social media to see a posting of all the questions and responses.
The Symposium ended with a special tribute by Dr. Bucelli to all those who have lost their lives to ALS and to those who keep striving to discover a cure. It was a very memorable and meaningful event for all who attended, and we hope to host similar events in the future.
