The MDA Community Impact in Research Award honors individuals or groups within the neuromuscular community who help advance research in meaningful, measurable ways, whether through advocacy, clinical trial participation, collaboration with scientists, or other innovative efforts that move the field forward.
Founder and CEO of the Hereditary Neuropathy Foundation (HNF), patient, caregiver, and advocate.
Since founding the Hereditary Neuropathy Foundation (HNF) in 2001 following the onset of her own Charcot-Marie-Tooth (CMT) symptoms, Allison has transformed a personal challenge into a global mission that has profoundly impacted the inherited neuropathy community. Under her leadership, HNF has grown from a grassroots effort into a respected organization that advances research, expands education, and strengthens support for individuals and families affected by CMT worldwide. She has been a driving force behind patient-centered research, leading the development and expansion of the Global Registry for Inherited Neuropathies to ensure that patient experiences help shape and accelerate therapy development. Allison also launched the TRIAD program, bringing together academic, government, and industry partners to advance treatments and foster scientific collaboration. Through strategic partnerships and successful grant funding, she has helped create critical resources for the CMT community, including a national resource center and innovative tools that improve diagnostic access, clinical trial readiness, and patient engagement. Her efforts have amplified the voices of patients and caregivers through educational programs, community initiatives, and forums that place lived experience at the center of research and care. Guided by compassion, purpose, and an unwavering commitment to collaboration, Allison has helped transform CMT from a frequently overlooked condition into one increasingly recognized as research-worthy, treatable, and deserving of greater attention across the neuromuscular field.
As the inaugural recipient of this award, Donavon Decker and his family devoted more than 25 years to the limb girdle muscular dystrophy (LGMD) community. From his early participation in one of the first muscular dystrophy gene therapy trials to his tireless advocacy efforts, Donavon played a vital role in advancing research and raising awareness for rare diseases. His perseverance helped shape the field of gene therapy and encouraged countless others to support scientific progress.
Through his courage, advocacy, and unwavering commitment, Donavon left a lasting mark on the neuromuscular disease community. His efforts not only advanced groundbreaking research but also inspired many to take action. Though he is no longer with us, his legacy continues through the impact he made and the work his family carries forward. We are honored to recognize Donavon Decker as the 2025 award recipient in tribute to his remarkable contributions and enduring influence on the future of LGMD research and care.