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Brooke Eby, ALS Patient and Advocate, to deliver Keynote Address at 2024 MDA Clinical & Scientific Conference

Following the keynote address, an expert panel discusses the challenges of neuromuscular disease in the age of therapies led by Sharon Hesterlee, PhD, Chief Research Officer, MDA.

NEW YORK, February 15, 2024 – The Muscular Dystrophy Association (MDA) today announced Brooke Eby will be the keynote speaker at the 2024 MDA Clinical & Scientific Conference (being held in Orlando, FL March 3-6), where she will address the world’s leaders in neuromuscular disease research and care. Eby was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, in March 2022 at the age of 33, and quickly established herself as a leading voice, raising awareness and funds for ALS research. Her presentation will take place on March 4 at 10am ET in-person in Orlando, FL and via live stream. Registration is open for both in-person and virtual attendance here.

Eby, has emerged as a beacon of hope and humor amidst the challenges of her diagnosis. Eby has shared her story with millions and appeared recently on The Today Show and CBS News. She has already raised $1 million for ALS research.

"It's a true honor to be involved in such an important and respected global event led by the Muscular Dystrophy Association," Eby expressed. "I'm thrilled to have this opportunity to address an audience of brilliant minds tirelessly working towards solutions. Let's face it, ALS is the rudest uninvited guest you'll ever meet – it barges in unannounced, overstays its welcome, and ruins everything. But we're here to show it the door."

As the largest US gathering focused solely on neuromuscular diseases including ALS, the 2024 MDA Clinical & Scientific Conference promises to delve into the latest research advancements and clinical achievements in the field.

"We are honored to have Brooke Eby grace our conference to share her story and insights as a patient and as a patient advocate," remarked Sharon Hesterlee, Ph.D., Chief Research Officer, MDA. "She exemplifies resilience and determination, qualities that resonate deeply with our mission to accelerate research, advance care, support for the families we serve.”

Eby's impactful message will be preceded by an introduction from Donald S. Wood, PhD, President and CEO of Muscular Dystrophy Association. Following her keynote speech, a distinguished panel discussion moderated by Dr. Hesterlee will explore the challenges and opportunities in neuromuscular disease research and care in the age of therapies. The discussion will include the challenges with gene therapy and feature a renowned panel including Barry Byrne, MD, PhD, Chief Medical Advisor, MDA, Professor and Associate Chair, UF Health Advanced Therapeutics and Powell Gene Therapy Center; Phillip John (P.J.) Brooks, PhD, Deputy Director, Division of Rare Diseases Research Innovation at the National Institute of Health; Elizabeth McNally, MDA, PhD, MDA Board Member, and Director, Center for Genetic Medicine at Northwestern Medicine; and Justin Moy, Alumni MDA National Ambassador who lives with congenital muscular dystrophy and is currently studying for his PhD in bioinformatics at Boston University.

View the full agenda here.

"Muscular Dystrophy Association remains steadfast in our commitment to driving progress in drug therapies and research," affirmed Dr. Byrne. "The discussions and panels slated for this conference will provide invaluable insights and foster collaboration towards our shared goal of improving lives, finding treatments, and ultimately cures for muscle disease."

Members of the neuromuscular community who are registered with MDA are welcome to participate in the virtual conference at no-cost. Please keep in mind that the level of information presented at this conference will be technical as this is a professional conference not geared for the general public. To join MDA visit MDA.org/Join.

About Muscular Dystrophy Association

Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, TikTok, LinkedIn, and YouTube.