Using the Patient Voice to Guide Clinical Research in Charcot-Marie-Tooth Disease: Allison Moore

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"The most powerful progress in rare diseases happens when scientific experts and lived experience work side by side. If we can work more collaboratively in the ecosystem, we're going to have a better chance of success."

At the 2026 Muscular Dystrophy Association (MDA) Clinical & Scientific Conference, held March 9-11, in Orlando, Florida, patient advocate Allison Moore, founder and chief executive officer of the Hereditary Neuropathy Foundation (HNF), was named recipient of the 2026 MDA Donovan Decker Community Impact Legacy Award. The MDA noted that this recognition reflects her long-standing contributions to advocacy, innovation, and leadership within the Charcot-Marie-Tooth (CMT) and inherited neuropathy community.¹

Following her diagnosis of CMT, Moore established the HNF in 2001, developing it into an internationally recognized organization focused on advancing therapeutic research and integrating the patient perspective into scientific efforts. Her work has included the creation of the Global Registry for Inherited Neuropathies, development of the TRIAD research accelerator program, and initiatives to support clinical trial readiness, multilingual diagnostic tools, and cross-sector collaboration. Collectively, these efforts have contributed to increased research activity and therapeutic development in CMT.

In an interview with NeurologyLive^® at the 2026 MDA Conference, Moore discussed the evolution of her role in research, noting how structured efforts to capture patient-reported experiences helped inform later clinical initiatives in CMT. She also emphasized the growing incorporation of patient-centered data into research frameworks and highlighted continued progress in therapeutic development, including gene-targeted approaches and investigational agents in the pipeline. Furthermore, she stressed the importance of collaborative, patient-informed trial design to enhance clinical trial effectiveness.

Click here for more MDA 2026 coverage.

REFERENCES
1. Muscular Dystrophy Association’s Legacy Awards Honor Innovators in Clinical and Scientific Research, and Community Impact at the 2026 MDA Clinical & Scientific Conference in March. News release. MDA. January 14, 2026. Accessed March 24, 2026. https://www.mda.org/press-releases/mda-legacy-awards-honor-innovators-in-clinical-and-scientific-research-and-community-impact-at-2026-mda-clinical-and-scientific-conference