Registration
HNF CMT Summit + Health & Wellness Retreat 2026
Ellicott City, Maryland | April 16-18, 2026
Join researchers, clinicians, patients, and families for the 2026 CMT Summit + Retreat - two transformative days where science meets self-care and community drives progress.
Turf Valley Resort
2700 Turf Valley Road
Ellicott City, MD 21042
Go to https://www.turfvalley.com/reservations#/room
2. Input the dates needed
3. Add 28K9OM under the "Group Code" (note: that is an "oh", not a zero, as the second-to-last letter; always best to copy and paste)
Or, simply call in to 410-465-1500, option 3
LOCAL HOTELS
4950 Beaver Run Court
Ellicott City, MD 21043
8880 Columbia 100 Parkway
Columbia, Maryland, 21045
8844 Columbia 100 Parkway
Columbia, Maryland 21045
DoubleTree by Hilton Hotel Columbia
5485 Twin Knolls Road
Columbia, MD 21045
Full Agenda - HNF Clinical Trial Readiness Summit
Thursday April 16th
6:00pm - 8:00pm Welcome Reception
Friday, April 17th
Open: CMT Biobank, Wearable Study, Exhibit Hall, Youth Lounge & Kid's Activity Table, Photobooth, Surgery & Bracing Consults
8:00am - 9:00am
Breakfast Served (Plated Sit Down)
9:00am - 9:30am
Welcome & Keynote - Innovating Hope: The Future of CMT Research
Thomas Holm Pedersen, PhD, CEO, NMD Pharma
9:30am - 9:45am
Patient Story
Sonny Granger, CMT2A Patient, HNF Board
9:45am - 10:30am
HNF Overview
Allison Moore, Founder/CEO, HNF
The Future of CMT Research & HNF Projects in Progress
Robert Bell, PhD, Chief Science Officer, Ascidian Therapeutics
Matt Jarpe, PhD, Chief Science Officer, HNF
Dianna Willis, PhD, Nuclear Imaging Institute
10:30am - 10:45am
Break
10:45am - 11:30am
Moving CMT Trials at Lightning Speed - FDA's New Framework for Rare Diseases
Janet Woodcock, MD, PhD, former Commissioner of FDA
Terry Pirovolakis, CEO/Founder, Elpida Therapeutics
Collin Hovinga, PharmD, MS, FCCP, VP of Rare and Orphan Diseases, Critical Path Institute (C-Path)
11:30am - 11:45am
Patient Story: Reagan Warren, CMT1A
11:45am - 12:30pm CMT Deploy - How Patients Have Impacted CMT Research
Ellen Morgan, Clinical Research Officer, HNF & Founder PROS Foundation Pathways for Rare and Orphan Studies, Kayla Cornett, PhD, HNF Fellowship & Research Fellow at University of Sydney
12:30pm - 1:30pm
Lunch Served
1:30pm - 1:45pm
Patient Story
Break-out Tracks (Research & Patient - Choose one below)
Research Track Option
1:50pm - 2:30pm
AI & Technology Advances in CMT
Tina Doung, PhD, Director, Clinical Outcomes Research & Development, Neurology, Stanford University
James Hickman, PhD, Chief Scientist, Hesperos Inc.
2:30pm - 3:15pm
Cracking the CMT Bottlenecks: A Unified Data Ecosystem for Breakthrough R&D
Peter Loupos, Founder & General Manager at Princeton Healthcare Strategies, LLC,
Charles Abams, MD, PhD, The University of Illinois at Chicago
Allison Moore, Founder/CEO, HNF
3:15pm - 3:30pm
Break
3:30pm - 4:15pm
Hidden Outcomes in CMT Clinical: Breathing, Hearing, Eyesight & More
Joey Nicoletti, CMT 1A Patient
Ellen Morgan, Founder PROS Foundation - Pathways for Rare and Orphan Studies
Debi Houliares, Prior HNF Board Member, Patient Mom, CMT6
Industry (TBD)
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, PhD, Faculty of Medicine and Health Candidate, University of Sydney
5:00pm
Closing Remarks
Patient Track Option
1:50pm - 2:15pm
CMT Speed Friending
2:20pm - 2:55pm
Choose one:
Option #1: Occupational Therapy (OT) & Workplace Accommodations - Bernadette Scarduzio
Advocacy, disclosure, and accessibility in employment
Option #2: CMT Kids: CMT Storytime - Live reading from CMT Children's authors & books
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.
Option #2: Cupping & Vibration Plate Demos - Bernadette Scarduzio
3:30pm - 3:45pm
Break
3:45pm - 4:15pm
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.
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.
5:00pm
Closing Remarks
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
Enjoy popcorn and movie time with fellow CMT friends and families
Saturday, April 18, 2026
Open: CMT Biobank, Wearable Study, Exhibit Hall, Youth Lounge & Kid's Activity Table, Photobooth, Surgery & Bracing Consults,
8:00am - 9:00am
Breakfast Served (Plated Sit Down)
9:00am - 9:30am
Welcome + Patient Stories
Estela Lugo, HNF Program Development Manager
Patient Stories: Melissa Amalfitano
9:30am - 10:00am
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
LIVE Bracing Demo & Orthotic Innovations Panel for CMT
Mitch Warner, CPO, President, Ortho Rehab Designs & Helios Bracing Inc
Ken Cornell, CPO, Founder, Cornell Orthotics and Prosthetics
11:05am - 11:45am
Choose one:
Option #1: Adaptive Travel, Outdoors & Sports with CMT:
Adaptive recreation, travel hacks, and adventure inspiration from CMT athletes, HNF Dream Team
Option #2: CMT Nutrition: Integrating Food into Nerve & Muscle Health:
Sheba Bergman, PhD, RDN, VP Project Management at Miralinc Pharma
11:50am - 12:15pm
Choose one:
Option #1: Breathing Better for CMT: Practical respiratory wellness session with adaptive breathing tools and daily exercises.
Option #2: Seated Aerobics, Julie Stone NASM-CPT
Join this fully seated CMT friendly aerobic exercise. All Abilities welcome!
Option #3: CMT Kids: CMT Storytime - Live reading from CMT Children's authors & books
12:15pm - 1:00pm
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
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?
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
Option #2 Women's Health, Estela Lugo
Option #3 Teen Journaling, Melissa Amalfitano
Option #4 Parenting Support, Brooke Shapiro
Option #5 Care Partners & Spouses, Amy Juarez
3:00pm - 3:45pm
Choose one:
Option #1: Made by CMT Hands - Creative Workshop, Melissa Amalfitano
Join this interactive and creative session while gaining emotional support
Option #2: CMT & Sleep - Optimize your sleep
Learn practical tools to optimize sleep with CMT
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.
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.
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
Reagan Warren
Kaitlin Siegel
Addie Lanciault
Julie Stone
Bernadette Scarduzio
Thank You Sponsors & Partners!
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