HNF Driving Progress at the 2026 MDA Clinical & Scientific Conference
The Hereditary Neuropathy Foundation (HNF) had a strong presence at the 2026 MDA Clinical & Scientific Conference in Orlando last week, where more than 1,900 leaders across science, medicine, industry, and patient advocacy gathered to advance neuromuscular research. Throughout the conference, HNF Founder and CEO Allison Moore helped lead conversations shaping the future of Charcot-Marie-Tooth disease (CMT) research and therapy development.
Honored with the Donavon Decker Legacy Award
A highlight of the conference was Moore receiving the MDA Donavon Decker Legacy Award for Community Impact in Research, recognizing her decades of leadership in advancing research and amplifying the patient voice.
In her acceptance remarks, Moore reminded the audience of the human impact behind scientific progress:
“Behind every data point is a human being brave enough to say yes to hope — not just for themselves, but for everyone who follows.”
Moore founded HNF in 2001 after her own diagnosis with CMT. Since then, the organization has helped build critical research infrastructure for CMT and related inherited neuropathies, including the Global Registry for Inherited Neuropathies (GRIN), the CMT Biobank, and the TRIAD Research Accelerator.
Advancing Research and Trial Readiness
HNF-supported research was also featured during the poster sessions. Dr. Kayla Cornett of the University of Sydney presented findings from HNF’s digital wearable study, which uses remote monitoring technology to measure daily activity and mobility in people with CMT, helping researchers capture real-world functional outcomes for clinical trials.
Dr. Cornett also presented the CMT-CERTIFY training program, a collaborative initiative designed to ensure clinical trial sites are fully prepared to evaluate CMT patients and collect reliable outcome measures across global research centers. HNF provided the infrastructure and patients at the CMT Clinical Trial Readiness Summit 2025, where over 30 clinicians were certified in the CMT Outcome instruments (CMT-FOM & CMTPedS), an essential component of clinical trial readiness.
Accelerating Partnerships and Industry Engagement
Moore also served as a panel speaker on “AI and the Future of Clinical Trial Design and Execution,” bringing the patient advocacy perspective to discussions on how technology can improve trial design and patient participation.
Throughout the conference, HNF met with academic researchers, clinicians, biotechnology companies, and pharmaceutical partners to strengthen collaborations aimed at moving CMT therapies more rapidly through the development pipeline. Engagements with companies such as TRIAD partner, NMD Pharma reflect HNF’s role in ensuring the patient voice is integrated into clinical trial design, outcome measures, and recruitment strategies.
Connecting the Global CMT Community
HNF also met with neuromuscular clinicians from clinics around the world, sharing HNF’s patient resources and opportunities for collaboration.
Moore emphasized the importance of aligning clinical care and patient experience:
“Clinicians see the medical journey of CMT, but patients live the daily reality of it. When we bring those perspectives together — and connect them to research — we create the foundation for better trials, better care, and ultimately better outcomes.”
Throughout the conference, the HNF Patient Advocacy Table served as a hub for connecting with neuromuscular disease advocates, patients, families, researchers, and industry leaders.
As Moore shared in her speech:
“Together we have moved research forward — step by step, discovery by discovery, patient by patient.”
HNF remains committed to ensuring the voice of the CMT community continues to drive innovation, partnerships, and progress toward therapies and ultimately cures.
Make a CMT Difference!
Turn CMT Symptoms into Science by joining HNF’s Global Patient Registry.
Connect with CMT families, researchers, and changemakers at the CMT Summit + Retreat on April 16-18, in Ellicott City, MD!
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