ALS Center Events for 2024

It was a full event schedule during the Spring, Summer and Fall for ALS Center staff.

MDA Muscle Walk of Missouri in Forest Park

In May 2024, we set up our information and education table at the MDA Muscle Walk of Missouri in Forest Park and supported our Department of Neurology colleagues who walked together as a team.

St. Louis Walk to Defeat ALS

In June 2024, the ALS Association’s annual St. Louis Walk to Defeat ALS was held in Forest Park. We participated in the walk and again set up our education table where we talked with many people in the St. Louis community impacted by ALS and shared information about our research. The month of July brought another walk, this time in Kimmswick, MO, which Kelly McCoy Gross, clinical research nurse, and Uma Talagadadivi, clinical research coordinator, attended. ALS Center staff are always happy to attend these types of fundraising and awareness-raising events in support of our ALS partner organizations.

Lyle Rakers Charitable Foundation’s 7th Annual Rakers Golf Classic

Another big event in the community that we attended was the Lyle Rakers Charitable Foundation’s 7th Annual Rakers Golf Classic fundraiser on September 16, 2024, in Forest Park. One of the ALS Center’s largest supporters, the Lyle Rakers Charitable Foundation was created in honor of Lyle Rakers, who was diagnosed with ALS in 2017. Lyle’s devoted group of family and friends formed the organization to raise money for ALS research with the hope of accelerating a cure. This past year, donations from the Lyle Rakers Foundation allowed the Miller Lab to purchase several state-of-the-art pieces of laboratory equipment that allow faster and more accurate work. Acquisition of this equipment would not have been possible without the Foundation’s contribution.

23rd Annual Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) Meeting

ALS Center clinicians and staff were excited to attend the NEALS meeting in October, despite Hurricane Milton causing a last-minute shift from an in-person meeting in Clearwater, FL, to a virtual platform. This year’s sessions (co-chaired by Dr. Miller) focused on technology and artificial intelligence (AI) and how it can help ALS patients improve communication and even physical function in the (hopefully) near future. We also learned how AI can play a role in clinical trials by assisting with trial design, outcome predictions and more.

We were proud to present four posters during the virtual poster presentations and will be featuring abstracts from our posters on our social media in the weeks to come:

• The effects of rehabilitation on functional outcomes in patients with SOD1 ALS treated with tofersen – presented by Dr. Sean Smith
• Patient decision factors in ALS genetic testing – presented by Bethany Gannon
• The effect of pre-surgical clinical factors on patient reported outcomes after percutaneous gastric tube placement – presented by Kelly McCoy Gross, RN
• A paradigm shift in physical therapy for those receiving tofersen treatment: A case report – presented by Elizabeth Hughes, DPT

Visit the NEALS website at neals.org for more information and helpful resources including webinars for patients and caregivers.