Clinical Benefits to Emphasizing Patient Voices in ALS: Brooke Eby

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A patient advocate within the ALS community discussed the importance of incorporating patients and their voices into clinical meetings and trial design to ultimately meet treatment goals. [WATCH TIME: 4 minutes]

WATCH TIME: 5 minutes

"There’s two components to the disease: the physical component—which I feel the doctors are well versed in—and the mental component, which is a little trickier. We’re always anticipating the next change."

In recent years, the medical community has made a significant push to further incorporate patients in the care paradigm, increasing their role in the shared decision-making process for their care, and elevating their voices when developing and choosing scales that measure the clinical benefits of therapy. Some organizations like the Muscular Dystrophy Association (MDA) and Cure SMA (spinal muscular atrophy) have already changed the way their clinical conferences are ran, emphasizing the need for patients with neuromuscular disorders to share their life experiences and be a liaison for the community’s treatment goals and needs.

At the 2024 MDA Clinical and Scientific Conference, held March 3-6, in Orlando, Florida, Brooke Eby, a patient with amyotrophic lateral sclerosis (ALS), gave the keynote address speech. Eby, who was diagnosed in March 2022 at the age of 33, focused her presentation around the speed of the disease and ways to incorporate a business approach to finding new treatments. She touched upon her background working for Salesforce and the ways other non-clinicians can help the ALS patient community. Moreover, the opportunity to speak at the conference, which is considered the largest US gathering focused solely on neuromuscular disorders, represented another step in the mission to accelerate research and advance care.

Eby, who has already raised more than $1 million for ALS research, sat down with NeurologyLive® at the meeting to discuss the value of patient voices and what they bring to the table. She highlighted some of the lesser-known aspects of the disease, including the mental components, and how they impact everyday quality of life. Furthermore, she emphasized the economic burden patients with ALS encounter and the need for additional funding to fuel the therapeutic pipeline.

Click here for more coverage on MDA 2024.

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