Research Day – Friday, April 17, 2026
Full Agenda – HNF Clinical Trial Readiness Summit
Friday, April 17th
Open: CMT Biobank (Belmont Room), Wearable Study (Merriweather Room), Exhibit Hall, Youth Lounge & Kid’s Activity Table, Photobooth, Surgery (Executive Boardroom) & Bracing (Temmara Room) Consults
8:00am – 8:45am (Location: Waterford Ballroom)
Breakfast Served (Plated Sit Down)
8:45am (Location: Waterford Ballroom)
Welcome Remarks
Allison Moore, CEO/Founder, HNF
Sheba Bergman, RDN, MS, PhD, VP Project Management at Miralinc Pharma
9:00am – 9:30am (Location: Waterford Ballroom)
Welcome & Keynote – Innovating Hope: The Future of CMT Research
Thomas Holm Pedersen, PhD, CEO, NMD Pharma
9:30am – 9:45am (Location: Waterford Ballroom)
Patient Story
Sonny Granger, CMT2A Patient, Board Member, HNF
9:55am – 10:30am
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
Break (Location: Exhibit Area)
10:30am – 10:45am
10:45am – 11:30am (Location: Waterford Ballroom)
Moving CMT Trials at Lightning Speed – FDA’s New Framework for Rare Diseases
Terry Pirovolakis, CEO/Founder, Elpida Therapeutics
Janet Woodcock, MD, former Commissioner of FDA
Peter Loupos, Founder & General Manager at Princeton Healthcare Strategies, LLC,
Collin Hovinga, PharmD, MS, FCCP, VP of Rare and Orphan Diseases, Critical Path Institute (C-Path)
Matt Jarpe, PhD, Pathfinder Scientific, Chief Science Officer, HNF
11:30am – 11:45am (Location: Waterford Ballroom)
Patient Story: Reagan Warren, CMT1A Patient
11:45am – 12:15pm (Location: Waterford Ballroom)
CMT Accelerator
12:15pm – 12:45pm (Location: Waterford Ballroom)
How Patients Have Impacted CMT Research
Ellen Morgan, Clinical Research Officer, HNF
Kayla Cornett, PhD, HNF Fellowship & Research Fellow at University of Sydney
1:00pm – 1:45pm (Location: Waterford Ballroom)
Lunch Served
Break-out Tracks (Research & Patient – Choose one below)
Research Track Option (Location: Amphitheater)
1:50pm – 2:30pm
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, Vice President Clinical Development Strategy Enablement at Thermo Fisher Scientific
2:30pm – 3:15pm
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
3:15pm – 3:30pm
Break
3:30pm – 4:15pm
Hidden Outcomes in CMT Clinical: Breathing, Hearing, Eyesight & More
Debi Houliares, CMT6 Carepartner
Amy Fraser, PhD, SHOEBOX Ltd
Renée Lefrançois, Au.D, Audiology Ototoxicity Consultant
4:15pm – 5:00pm
A New CMT Fatigue Assessment (CMTFatiqueS) as a secondary outcome measure for future CMT clinical trials
Kayla Cornett, PhD, HNF Fellowship & Research Fellow at University of Sydney
Monica Marzouk, BExSc, MMedRes, Faculty of Medicine and Health, University of Sydney
5:00pm
Closing Remarks (Location: Amphitheater)
6:30 – 8:00 PM
Outdoor Fire Pits & Sunset Social Hour
An informal evening gathering for continued discussion, networking, and relaxed community connection.
Patient Track Option (Location: Waterford Ballroom)
1:50pm – 2:15pm (Location: Waterford Ballroom)
CMT Speed-Friending
2:20pm – 2:55pm
Choose one:
Option #1: CMT in the Workplace – Bernadette Scarduzio, HNF, & Diane Hettinger, MPH, RN, CEBS, CLNC Advocacy, disclosure, and accessibility in employment (Location: Waterford Ballroom)
Option #2: CMT Kids: CMT Storytime – Live reading from CMT Children’s authors & books, Brooke Shapiro
(Location: Exhibit area)
3:00pm – 3:30pm
Choose one:
Option #1: Balance Exercises, Julie Stone NASM-CPT
Learn balance exercises that are CMT-friendly and span a wide range of ability levels. (Location: Waterford Ballroom)
Option #2: Cupping & Vibration Plate Demos – Bernadette Scarduzio (Location: Exhibit area)
3:30pm – 3:45pm
Break
3:45pm – 4:15pm (Location: Waterford Ballroom)
CMT Everyday Hacks, Gadgets & Helpful tools: Demo & Share & Tell
Come learn, share, and demo your favorite adaptive gadgets, life hacks, and go-to tools that make living with CMT easier. Leave with fresh ideas to try.
4:20pm – 4:50pm
Choose one:
Option #1: CMT Paws-Abilities, How Service Dogs Support Life with CMT, Wiseman & Houliares families discover the powerful bond between people living with CMT and their four-legged partners. This guide explores how specially trained service dogs help individuals with CMT navigate daily challenges. (Location: Waterford Ballroom)
Option #2: Seated Yoga – Christine Panico (Location: Exhibit Area)
Gentle, accessible, and grounding, this session brings the benefits of yoga to everyone, regardless of mobility. Join us for a guided seated practice designed with CMT in mind.
4:50pm – 5:20pm
Ask the Service Dog Trainer – Mike Burkel, Trainer
Following CMT Paws-abilities, bring your questions straight to the expert. Service dog trainer Mike Burkel opens the floor for a 30-minute live Q&A — covering everything from selecting the right dog and training for your specific CMT needs, to public access, owner training, and long-term care. (Location: Waterford Ballroom)
6:30 – 8:00 PM
Outdoor Fire Pits & Sunset Social Hour
An informal evening gathering for continued discussion, networking, and relaxed community connection.
8:00 – 9:30 PM
CMT Movie Night (Location: Amphitheater)
Enjoy popcorn and PG movie time with fellow CMT friends and families!
Research Day – Saturday, April 18, 2026
Open: CMT Biobank (Belmont Room), Wearable Study (Merriweather Room), Exhibit Hall, Youth Lounge & Kid’s Activity Table, Photobooth, Surgery (Executive Boardroom) & Bracing (Temmara Room) Consults
8:00am – 9:00am (Location: Waterford Ballroom)
Breakfast Served (Plated Sit Down)
9:00am – 9:30am (Location: Waterford Ballroom)
Welcome + Patient Stories
Estela Lugo, HNF Program Development Manager
Patient Stories: Melissa Amalfitano, GDAP1 Patient
9:30am – 10:00am (Location: Waterford Ballroom)
CMT Speed-Friending
Meet your people, fast! This fun, structured session connects you with fellow CMT community members in a series of quick, easy conversations. Leave with new friends who just get it.
10:00am – 11:00am (Location: Waterford Ballroom)
LIVE Bracing Demo & Orthotic Innovations Panel for CMT
Mitch Warner, CPO, President, Ortho Rehab Designs & Helios Bracing Inc.
Ken Cornell, CO, Founder, Cornell Orthotics and Prosthetics
11:05am – 11:45am
Choose one:
Option #1: Adaptive Travel, Outdoors & Sports with CMT, Estela Lugo, HNF, Julie Stone NASM-CPT
Adaptive recreation, travel hacks, and adventure inspiration from CMT athletes, HNF Dream Team (Location: Amphitheater)
Option #2: CMT Nutrition: Integrating Food into Nerve & Muscle Health,
Sheba Bergman, RDN, MS, PhD, VP Project Management at Miralinc Pharma (Location: Waterford Ballroom)
11:50am – 12:15pm
Choose one:
Option #1: Breathing Better for CMT: Practical respiratory wellness session with adaptive breathing tools and daily exercises. (Location: Amphitheater)
Option #2: Seated Aerobics, Julie Stone NASM-CPT
Join this fully seated CMT-friendly aerobic exercise. All Abilities welcome! (Location: Waterford Ballroom)
Option #3: CMT Kids: CMT Storytime – Bernadette Scarduzio, Live reading from CMT Children’s authors & books (Location: Exhibit area)
12:15pm – 1:00pm (Location: Waterford Ballroom)
Lunch Served
1:00pm – 1:45pm
Choose one:
Option 1: Patient Story & CMT Surgery Live Q&A with Dr. Pfeffer
What does any patient considering CMT surgery need to know? Learn key surgery issues from a leading expert during this informative and Q&A session (Location: Waterford Ballroom)
Option 2: Exercise for CMT 101, Julie Stone, NASM-CPT
Learn key issues that arise while exercising with CMT like fatigue, balance, and lack of grip strength. What are the best exercises for CMT? What adaptive tools are out there for exercise? (Location: Amphitheater)
2:00pm – 2:45pm
Choose one: These intimate circles provide a safe, empowering, and supportive space for all.
Option #1 Men’s Group, Eduardo Juarez, MA, LPC, NPT-C (Location: Temmara Room -12ppl)
Option #2 Women’s Health, Estela Lugo (Location: Amphitheater)
Option #3 Teen Journaling, Melissa Amalfitano (Location Exhibit area)
Option #4 Parenting Support, Brooke Shapiro (Location: Waterford Ballroom)
Option #5 Care Partners & Spouses, Amy Juarez (Location: Merriweather Room)
3:00pm – 3:45pm
Choose one:
Option #1 Made by CMT Hands – Creative Workshop, Melissa Amalfitano
Join this interactive and creative session for all ages while gaining emotional support (Location: Waterford Ballroom)
Option #2: CMT & Getting Better Sleep, Lori Gregory, MS, RPSGT
Learn practical tools to optimize sleep with CMT (Location: Amphitheater)
4:00pm – 4:45pm
Choose one:
Option #1: Adaptive Driving & Vehicle Demo, Bernadette Scarduzio
Learn what’s involved in transitioning to hand controls for CMT and how an adaptive vehicle looks and functions. (Location: Amphitheater)
Option #2: Seated Yoga – Christine Panico
Gentle, accessible, and grounding, this session brings the benefits of yoga to everyone, regardless of mobility. Join us for a guided seated practice designed with CMT in mind. (Location: Waterford Ballroom)
4:45pm – 6:00pm
Grand Finale: Adaptive Fashion Show & Raffles – Becky Etcheberger
Celebrate CMT-friendly clothing, self-expression and community empowerment and win valuable and CMT-friendly, exciting prizes (Location: Waterford Ballroom)
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