Thank You for an Incredible 2026 CMT Clinical Trial Readiness Summit
Dear CMT Summit Attendees,
Thank you for being part of our 2026 CMT Summit, our biggest gathering yet, with over 200 attendees coming together to connect, learn, and inspire one another. We are grateful for each and every one of you who helped make this weekend truly special.
We extend our deepest gratitude to NMD Pharma and their CEO, Thomas Holm Pedersen, PhD, for their generous partnership and unwavering support of the Summit. Their commitment to advancing CMT research, developing life-changing therapies, and moving us closer to a cure along with Dr. Pedersen’s inspiring keynote set the tone for an incredible weekend.
Our sponsors represent the full ecosystem of CMT progress from biotech and pharma innovators advancing research and developing therapies, to technology and mobility partners dedicated to improving everyday life for those living with CMT. We are incredibly grateful for
2026 CMT Summit — Speakers & Sessions
We have listed all speakers and sessions below, with many of them linked to their pages and/or contact information.
Friday, April 17th
Welcome & Keynote
- Allison Moore, CEO/Founder, HNF
- Sheba Bergman, RDN, MS, PhD, VP Project Management, Miralinc Pharma
- Thomas Holm Pedersen, PhD, CEO, NMD Pharma
- Sonny Granger, CMT2A Patient, Board Member, HNF
The Future of CMT Research & HNF Projects in Progress
- Robert Bell, PhD, Chief Science Officer, Ascidian Therapeutics
- Dianna Willis, PhD, Nuclear Imaging Institute
- Matt Jarpe, PhD, Chief Science Officer, HNF
Moving CMT Trials at Lightning Speed: FDA’s New Framework for Rare Diseases
- Janet Woodcock, MD, Former Commissioner of FDA
- Peter Loupos, Founder & General Manager, Princeton Healthcare Strategies, LLC
- Collin Hovinga, PharmD, MS, FCCP, VP of Rare and Orphan Diseases, Critical Path Institute
- Matt Jarpe, PhD, Pathfinder Scientific, Chief Science Officer, HNF
Patient Story
How Patients Have Impacted CMT Research
- Ellen Morgan, Clinical Research Officer, HNF
- Kayla Cornett, PhD, HNF Fellowship & Research Fellow, University of Sydney
Innovation & AI: The Promise of Tomorrow
- James Hickman, PhD, Chief Scientist, Hesperos Inc.
- Silvia Blemker, PhD, Chief Science Officer & Co-Founder, Springbok, Inc.
- Timothy Mudric, VP Clinical Development Strategy Enablement, Thermo Fisher Scientific
Cracking the CMT Bottlenecks: A Unified Data Ecosystem for Breakthrough R&D
- Uri Manor, PhD, UC San Diego
- Travis Rotterman, PhD, Boston University
- Matt Jarpe, PhD, Chief Science Officer, HNF
Hidden Outcomes in CMT Clinical: Breathing, Hearing, Eyesight & More
- Debi Houliares, CMT6 Caregiver
- Amy Fraser, PhD, SHOEBOX Ltd.
- Renée Lefrançois, Au.D, Audiology Ototoxicity Consultant
A New CMT Fatigue Assessment as a Secondary Outcome Measure for Future CMT Clinical Trials
- Kayla Cornett, PhD, HNF Fellowship & Research Fellow, University of Sydney
- Monica Marzouk, BExSc, MMedRes, University of Sydney
CMT in the Workplace
Balance Exercises
CMT Paws-Abilities: How Service Dogs Support Life with CMT 🐾
Ask the Service Dog Trainer
- Mike Burkel, Trainer
- Interested in a reduced-cost service dog? Apply here
Seated Yoga
Saturday, April 18th
Welcome & Patient Stories
- Estela Lugo, HNF Program Development Manager
- Melissa Amalfitano, GDAP1 Patient
LIVE Bracing Demo & Orthotic Innovations Panel for CMT
- Mitch Warner, CPO, President, Ortho Rehab Designs & Helios Bracing
- Ken Cornell, CO, Founder, CMT Mobility Rescue
Adaptive Travel, Outdoors & Sports with CMT
- Estela Lugo, HNF Program Development Manager
- Julie Stone, NASM-CPT
CMT Nutrition: Integrating Food into Nerve & Muscle Health
- Sheba Bergman, RDN, MS, PhD, Collage Nutrition
Patient Story & CMT Surgery Live Q&A
Exercise for CMT 101
Made by CMT Hands: Creative Workshop
CMT & Getting Better Sleep
- Lori Gregory, MS, RPSGT
Adaptive Driving & Vehicle Demo
Seated Yoga
their support in making the 2026 CMT Summit possible.
Adaptive Fashion Show
To our incredible models, thank you for lighting up the runway and showcasing adaptive fashion with confidence and style. Congratulations to all of our prize winners!
We are grateful to the following donors who contributed prizes:
- Billy’s Footwear, 10% off your purchase, plus an additional 10% donated back to HNF
- MagnaReady Clothing
- Lairos Socks
- Adaptive Hands
- Cadence Shoes
- All Bodies Community
- ByAcre
- Dext Products
📚 Books:
- Brooke Shapiro, CMT & Me
- Bernadette Scarduzio, Bernadette Goes to School
- Eliza Hull, Come Over to My House and The World We Can Build
- Charity Harris, What If We Were All the Same
- Daniel Blevins, CMT Unbroken
- Susan Stucky, When Will the Suffering End
- Angellys Diaz, Chronically Me
- HNF, ABCs of CMT Pain Management and CMT Self Care
Many of the adaptive products and books shared during the Summit can be found on our HNF CMT Amazon Wish List.
Grand Finale: Adaptive Fashion Show & Raffles 🎉
- Becky Etcheberger
- Models: Reagan W., Kaitlin S., Addison L., Ciara L., Julie Stone, Connor W., Camden W., Kaelynn L., Anthony R.
Thank you to those who donated gowns to the Gowns That Give program. We collected 18 dresses this year!
View Photo Album here.
Thank you for attending our 2026 Clinical Trial Readiness Summit!
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