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Muscular Dystrophy Association’s Legacy Awards Honor Pioneers in Clinical Research and Community Impact at 2025 MDA Clinical & Scientific Conference in March
Dr. Katherine Mathews to receive MDA Legacy Award for Achievement in Clinical Research; Donavon Decker to receive MDA Legacy Award for Community Impact in Research.
NEW YORK — Tuesday, January 21, 2025 — The Muscular Dystrophy Association (MDA) is proud to announce that Katherine Mathews, MD, a renowned leader in genetic medicine and pediatric neurology at the University of Iowa, will be honored with the 2025 MDA Legacy Award for Achievement in Clinical Research. Additionally, Donavon Decker, the first muscular dystrophy gene therapy recipient and a tireless advocate for the limb-girdle muscular dystrophy (LGMD) community, will receive the 2025 MDA Legacy Award for Community Impact in Research. Both awards will be presented at the MDA Clinical & Scientific Conference, set to take place in Dallas, Texas, from March 16-19, 2025, with the awards presentation during the opening session on March 17. Registration is open now at MDAconference.org.
“The Muscular Dystrophy Association is pleased to honor both Dr. Katherine Mathews and Donavon Decker for their extraordinary contributions to the field of neuromuscular diseases,” said Sharon Hesterlee, PhD, EVP, Chief Research Officer, MDA. “Dr. Mathews has long been at the forefront of clinical research, particularly in documenting the natural history of several neuromuscular diseases and testing new therapies. Her groundbreaking work over the years and commitment to her patients continues to have a profound impact on the lives of patients and their families. Similarly, Donavon’s advocacy for LGMD—and the unwavering commitment of the Decker family, in which five siblings were affected by the disease—to advancing research, have been transformative for the community. Both exceptional individuals embody the MDA’s mission of accelerating progress for people living with neuromuscular diseases.”
Katherine Mathews, MD: A Lifetime of Clinical Research Excellence
Dr. Katherine Mathews will receive the 2025 MDA Legacy Award for Achievement in Clinical Research for her significant contributions to the understanding and treatment of genetic disorders affecting the neuromuscular system. As a professor of Pediatrics and Neurology at the University of Iowa’s Roy J. and Lucille A. Carver College of Medicine, Dr. Mathews has been a leader in clinical research for over two decades. Her work spans multiple neuromuscular diseases, with a particular focus on Duchenne muscular dystrophy (DMD), facioscapulohumeral dystrophy (FSHD), Friedreich’s ataxia and Limb-girdle muscular dystrophy (LGMD).
Dr. Mathews is best known for her early work in helping to pinpoint the genetic cause of facioscapulohumeral muscular dystrophy, as well as her work in documenting the natural history of Duchenne muscular dystrophy, the dystroglycanopathies, and Friedreich’s ataxia. She has been Principal Investigator (PI) on over 30 industry-sponsored clinical trials focused on neuromuscular diseases, significantly advancing both clinical care and scientific understanding and serves as a Co-PI on the Center for Disease Control’s MD STARnet muscular dystrophy surveillance study.
In addition to her research, Dr. Mathews has played a key role in mentoring the next generation of clinical researchers through her leadership as part of the Iowa Wellstone Muscular Dystrophy Specialized Research Center. As a Co-Principal Investigator and MDA Care Center Director, she has fostered a collaborative environment for advancing neuromuscular disease research.
Dr. Mathews has also served on MDA’s Research Advisory Committee for over two decades, lending her expertise towards prioritizing promising research for MDA to support.
“I am deeply honored to receive the 2025 MDA Legacy Award for Achievement in Clinical Research,” said Dr. Mathews. “Advancing knowledge about neuromuscular diseases and improving care for patients have been driving forces throughout my career, and I have deeply appreciated the support of the Muscular Dystrophy Association. From my early research in genetic mapping of FSHD to my current work in rare muscular dystrophies, the focus has always been on advancing clinical care and supporting the next generation of clinicians and researchers. This recognition fuels my continued dedication to the families we serve and to the development of new treatments for neuromuscular diseases.”
Dr. Mathews’ ongoing research and advocacy for patients exemplify the spirit of the MDA Legacy Award. Her contributions to understanding the natural history of neuromuscular disease have directly improved clinical outcomes and expanded our understanding of these diseases.
Donavon Decker: Advocate and Catalyst for Change in LGMD Research
Donavon Decker will be recognized with the 2025 MDA Legacy Award for Community Impact in Research for his outstanding advocacy and personal dedication to advancing research in limb-girdle muscular dystrophy (LGMD). Diagnosed with LGMD 47 years ago, Decker has become a powerful voice in the community, encouraging participation in clinical trials, supporting research funding, and raising awareness about the impact of this rare disease. He is one of eight siblings, five of whom were diagnosed with LGMD type 2D (LGMD2D), including Donavon, and three of whom have since passed away. Additionally, two of his nieces live with LGMD2i.
Decker’s research journey began when he participated in one of the earliest muscular dystrophy gene therapy safety trials in 1999. Since then, he has worked tirelessly alongside his family to raise awareness and advocate for research focused on LGMD, serving on the Muscular Dystrophy Coordinating Committee, and the LGMD Community Advisory Board. His sister, June Burney was the first person to ever receive gene therapy via vascular delivery for muscular dystrophy. Their efforts have led to significant improvements in the understanding of LGMD, and his advocacy has inspired others to engage in and support research for rare diseases. Decker is the co-founder of Angle Therapeutics.
“Receiving the MDA Legacy Award for Community Impact in Research is a true honor,” said Decker. “When I was first diagnosed with LGMD, I never imagined I would be able to help drive progress in research for the condition. My family and I have always believed in the power of research to change lives, and it’s been incredibly fulfilling to see our efforts make a meaningful impact alongside the entire community with the support of the Muscular Dystrophy Association. The MDA is the reason why gene therapy is even possible today because of the money they invested 25 years ago developing the first-ever gene therapy trial. I’m proud to be part of a community that’s working toward a brighter future for people and their families living with neuromuscular diseases.”
Decker’s advocacy and dedication have helped accelerate research efforts and improved the quality of life for individuals affected by LGMD. His work is a testament to the power of grassroots involvement in scientific progress and community-driven change.
Press inquiries email press@mdausa.org.
About the 2025 MDA Clinical & Scientific Conference
The MDA Clinical & Scientific Conference is the largest U.S. gathering focused exclusively on neuromuscular diseases, bringing together researchers, clinicians, families, and industry for an in-depth look at the latest advances in both clinical and scientific research. The 2025 conference will feature a range of sessions on breakthroughs in gene therapy, clinical trials, and disease management, and will provide an opportunity for attendees to connect with experts and advocates in the field. Members of the neuromuscular disease community who are registered with MDA are welcome to participate in the virtual conference at no-cost or may register to attend in-person at the patient/caregiver rate until allotted spaces are filled. Learn more at MDAconference.org.
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 over 300 other neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating support and inclusion of families living with neuromuscular disease. 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
About Muscular Dystrophy Association’s 75th Anniversary
In 2025, the Muscular Dystrophy Association proudly marks 75 years legacy, impact and momentum in the fight against neuromuscular diseases. Since our founding, MDA has been at the forefront of research breakthroughs, providing access to comprehensive care, and championing the rights of people living with muscular dystrophy, ALS, and over 300 other neuromuscular diseases. This milestone has been made possible by generations of dedicated support from people living with neuromuscular disease, their families, researchers, clinicians, volunteers, and donors—who boldly drive our mission forward. As we look ahead, we remain committed to honoring this legacy, building on the impact we’ve made together, and continuing our momentum toward transformative progress for people living with neuromuscular disorders.
