MDA honors researcher, patient advocate with 2025 Legacy Awards
Awards recognize impact of 'pioneers' in MD community, clinical research
The Muscular Dystrophy Association (MDA) has announced its 2025 Legacy Awards, and will honor two individuals who have made pioneering strides toward improving life for people affected by muscular dystrophy.
The 2025 MDA Legacy Award for Achievement in Clinical Research will be given to Katherine Mathews, MD, a researcher who has studied muscular dystrophy for decades, and is a “leader in genetic medicine and pediatric neurology,” the nonprofit announced.
Meanwhile, Donavon Decker, who has limb-girdle muscular dystrophy (LGMD) and has long served as a patient advocate, was selected for the 2025 MDA Legacy Award for Community Impact in Research.
Both awards will be presented at the 2025 MDA Clinical & Scientific Conference, which will take place in mid-March in Dallas.
“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,” Sharon Hesterlee, PhD, executive vice president and chief research officer at the MDA, said in a press release.
The release dubbed the awardees “pioneers in clinical research and community impact.”
Legacy Awards to be presented at annual MDA conference in March
A clinical researcher for more than 20 years, Mathews has worked to improve understanding of various neuromusclar diseases, including LGMD, Duchenne muscular dystrophy (DMD), and facioscapulohumeral dystrophy (FSHD). Among her accolades, she helped to pinpoint the genetic cause of FSHD, and has also led pioneering work to understand how DMD progresses without treatment.
Mathews said she was “deeply honored” by the award.
“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,” Mathews said.
While known for clinical research, Mathews also has been involved in dozens of clinical trials in her career to date. She’s also been instrumental in training new researchers and in advocacy work, according to Hesterlee.
“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,” Hesterlee said. “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.”
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.
For his part, Decker — who was diagnosed with LGMD nearly 50 years ago — has long been an advocate for people with this type of MD, raising awareness and helping to fuel research into the condition. He’s one of eight siblings, five of whom have LGMD.
“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,” Hesterlee said.
Decker’s advocacy journey dates back to the 1990s, when he became one of the first patients ever to receive a gene therapy for muscular dystrophy in an early clinical trial.
“When I was first diagnosed with LGMD, I never imagined I would be able to help drive progress in research for the condition,” Decker said. “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.”
Being selected for this award is “a true honor,” said Decker, who has served on the Muscular Dystrophy Coordinating Committee, and the LGMD Community Advisory Board.
“The MDA is the reason why gene therapy is even possible today,” Decker said, noting the funding the nonprofit invested more than two decades ago to help develop the treatment.
“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 said.
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