CMT patient advocate to be honored by MDA for helping advance research
2026 Legacy Award recipient founded the Hereditary Neuropathy Foundation
Written by |
A Charcot-Marie-Tooth (CMT) patient advocate who heads a nonprofit dedicated to improving the lives of people affected by CMT and related disorders has been selected as this year’s recipient of a key award from the Muscular Dystrophy Association (MDA).
Allison Moore, the founder and CEO of the Hereditary Neuropathy Foundation (HNF), will receive the Donavon Decker Legacy Award for Community Impact in Research at the MDA’s annual conference, which this year takes place in early March, the association announced in a press release.
The mission of the HNF, which Moore started in 2001, is to raise awareness, support families, and fund research. According to the MDA, in the years since the foundation’s launch, Moore has “built it into an internationally respected organization centered on accelerating therapeutic discovery, elevating the patient voice, and reshaping the scientific landscape for CMT.”
Under Moore’s leadership, the HNF has helped launch the Global Registry for Inherited Neuropathies (GRIN) — a worldwide effort to collect more data on CMT and related disorders — as well as the TRIAD research accelerator program. TRIAD brings together pharma companies and academic researchers to accelerate the development of new CMT treatments. Moore has also helped advance clinical research and expand multilingual diagnostic tools.
“Allison’s vision has helped elevate CMT from an overlooked rare condition to a rapidly advancing therapeutic field,” the MDA stated.
The MDA, an advocacy group that supports people with a range of neuromuscular conditions, presents its Community Impact award each year to honor an advocate who has helped move research forward. The award was renamed this year in honor of the late Donavon Decker, a patient advocate with limb-girdle muscular dystrophy (LGMD) who was a lifelong champion of research. He was one of the first people to receive a gene therapy in a clinical trial.
Decker himself was given this MDA award last year; he died a few months later.
Award winner says her goal is to build community
Moore, who will be presented with the award at the 2026 MDA Clinical and Scientific Conference, to be held in Florida and virtually, said she is “incredibly honored” to be named the recipient of the impact award now named for Decker.
“Donavon’s story and advocacy have inspired so many of us working to change what’s possible for people living with neuromuscular disease,” Moore said. “When I founded the Hereditary Neuropathy Foundation after my own CMT diagnosis, my goal was to build a community where patients could truly be heard — and where their lived experiences would drive research, innovation, and meaningful progress.”
The patient advocate said she hopes efforts like hers will lead to a brighter future for people with neuromuscular conditions.
When I founded the Hereditary Neuropathy Foundation after my own CMT diagnosis, my goal was to build a community where patients could truly be heard — and where their lived experiences would drive research, innovation, and meaningful progress.
“I am grateful to the Muscular Dystrophy Association for recognizing the importance and power of patient-centered science, and for partnering with our community to create a future defined by greater understanding, equity, and hope,” Moore said.
The MDA this year is also honoring Michio Hirano, MD, chief of the neuromuscular medicine division at Columbia University Irving Medical Center in New York. Hirano will receive the MDA Legacy Award for Achievement in Clinical Research.
According to the nonprofit, Hirano is being recognized for “decades of groundbreaking contributions.” His work has helped to better understand and treat neuromuscular and mitochondrial disorders, and has advanced discoveries in genetics, molecular mechanisms, and therapeutic development.
Hirano has also mentored emerging clinician scientists and has shown exceptional dedication and commitment to families living with neuromuscular conditions, the MDA stated.
Sharon Hesterlee, PhD, the MDA’s president and CEO, said the organization “is proud to recognize Dr. Michio Hirano and Allison Moore — two extraordinary leaders who have advanced neuromuscular research and empowered our community.”
