Summit

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.

(Full Summit Agenda Below)

Order of Events:

• Thursday, April 16th: Wearable Study & CMT Biobank

• Thursday, April 16th: Welcome Reception 

• Friday, April 17th: Research & Patient Day (2 tracks) Wearable Study & CMT Biobank

• Saturday, April 18th: Patient Day

  
  

  Weekend Highlights:

• Breakthrough CMT research, AI innovation & digital wearable studies

• Biomarker discovery, clinical trial readiness & FDA insights

• CMT Biobank participation & patient-driven research impact

• Mobility, bracing, orthotic innovations & adaptive tech demos

• One-on-one surgery & bracing consultations with CMT experts

• Therapy animals, wellness experiences & mind-body relaxation

• CMT-friendly movement, Pilates & accessible exercise for all abilities

• Nutrition, nerve health, fatigue & whole-body wellness strategies

• Adaptive driving, travel tools & independence solutions

• Patient stories, speed-friending & support circles for all ages

• Kids, teens, families & caregiver programming

• Adaptive Fashion Show, raffles & Grand Finale celebration

 Full Summit AgendaDiscount Hotel Rooms

1. 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, for our onsite Reservations department. For anyone wishing to book the ADA rooms, phoning in their reservation is the best option.

Full Summit Agenda 

Thursday, April 16, 2026 | Welcome & Community

8:00 AM - 6:00 PM
HNF/BioSensics-sponsored Digital Health Technology (DHT) Wearable Study (By Appointment Only)

• Children ages 8-18 and all prior wearable study participants are eligible to join/continue a study utilizing digital wearable technology to safely and passively track everyday movement and function in real-world settings. By taking part, you are helping researchers better understand how CMT affects daily life over time and supporting the development of more sensitive outcome measures for clinical trials and future treatments.
• If you're interested or would like to learn more, please contact Courtney Hollett, GRIN Registry Coordinator, at  [email protected]

8:00 AM - 6:00 PM
CMT Biobank (Walk-In Appointments)

• Contribute blood and biospecimens to help researchers identify biological markers of CMT, understand how the disease changes over time, and speed the development of new treatments.

6:00 - 8:00 PM
Welcome Reception: Gowns That Give

• Join us as we kick off the Summit with cocktails, hors d'oeuvres, and community connection. Comfort comes first-dress up if you'd like, or come as you are. Guests may choose to wear or donate gently worn formal gowns in support of Gowns to Give, hear highlights of the Summit itinerary, and connect with fellow attendees. A dedicated youth table will be available.

Friday, April 17, 2026 | Day 1 - Research, Movement & Connection

8:00 AM - 6:00 PM
CMT Biobank (Walk-In Appointments)

• Contribute blood and biospecimens to help researchers identify biological markers of CMT, understand how the disease changes over time, and speed the development of new treatments.

8:00 AM - 6:00 PM
Surgery & Bracing Evaluations (By Appointment Only)

Dr. Glenn Pfeffer & Mitch Warner

• Individualized consultations with experienced clinicians to review surgical considerations, bracing options, gait support, and personalized gait and mobility strategies for CMT.

8:00 - 9:00 AM
Breakfast (Included)

• Start the day with a relaxed sit-down breakfast while networking with fellow attendees, patients, care partners, clinicians, researchers, biotech/pharma, and FDA regulators. 

9:00 - 9:30 AM
Welcome & Keynote - Innovating Hope: The Future of CMT Research

• A high-energy opening that sets the stage for the Summit, highlighting the power of scientific momentum, research collaborations, clinical trials, and what's next for CMT.

9:30 - 9:45 AM
Patient Stories

• Personal perspectives from individuals and families living with CMT, grounding the science and discussions in real-world experiences.

9:45 - 10:30 AM
The Future of CMT Research & HNF Projects in Progress

• An overview of HNF-funded CMT-DEPLOY research programs accelerating multiple therapeutic pathways-including gene therapies, small-molecule and biologic approaches -through preclinical development and translational studies to support clinical-stage readiness.

10:30 - 10:45 AM
Break

• Time to refresh, connect with vendors, and attendees.

10:45 - 11:30 AM
Moving CMT Trials at Lightning Speed 

• An overview of emerging FDA regulatory pathways and how patient-generated data-including real-world data, digital health technologies, and patient-reported outcomes-is shaping regulatory decisions, enabling more efficient clinical trials, faster development timelines, and reduced burden for patients and families.

11:30 - 11:45 AM
Patient Stories

• Personal perspectives from individuals and families living with CMT, grounding the science and discussions in real-world experience
  

11:45 AM - 12:30 PM
CMT DEPLOY - How Patients Have Impacted CMT Research

• Explore how patient-generated data and biospecimens are advancing CMT research, including FDA qualification efforts for wearable-derived mobility metrics, blood-based biomarkers, fatigue measures, patient-reported outcomes, and real-world upper- and lower-limb functional endpoints.

12:30 - 1:30 PM
Lunch (Included)

• Refuel and connect while continuing conversations with fellow attendees, patients, care partners, clinicians, researchers, biotech/pharma, and FDA regulators and exhibitors.

1:30 - 1:45 PM
Patient Stories - Clinical Trial Experience

• Firsthand insight into the real-life experience of participating in CMT clinical trials-what it's really like, what they've learned, and why patient involvement is so important in shaping better, more accessible, patient-centered clinical trial design and future treatments.

Scientific Track | Researchers & Industry

1:50 - 2:30 PM
AI & Technology Advances in CMT

• Learn how artificial intelligence, advanced imaging modalities, wearable sensors, and remote monitoring technologies are being applied to enhance outcome measurement, enable objective functional assessment, and optimize clinical trial design in CMT.

2:30 - 3:15 PM
Cracking the CMT Bottlenecks: A Unified Data Ecosystem Built for Breakthrough R&D

• Explore how unified access to patient-level data, biospecimen repositories, CMT pre-clinical models, and imaging enables biomarker qualification, sharper patient stratification, and translation-ready research in CMT.

3:15 - 3:30 PM
Break

• Time to refresh, connect with vendors, and attendees.

3:30 - 4:15 PM
Hidden Outcomes in CMT Clinical: Breathing, Hearing, and Eyesight & More

• Discover overlooked clinical signals in upper limbs, hand dexterity, breathing, and hearing that can reshape outcome assessment in CMT trials. Explore underutilized physiological and functional measures that may improve endpoint sensitivity, strengthen trial design, and better capture disease burden and patient-relevant outcomes in CMT.

4:15 - 5:00 PM
A New Patient Reported Outcome CMT Fatigue Assessment (CMTFatiqueS) as a Secondary Outcome Measure

• Learn how a novel, disease-specific fatigue assessment currently in development aims to enable more accurate quantification of fatigue-one of the most burdensome and historically under measured symptoms in CMT.

5:00 - 5:15 PM
Closing Remarks

• Key takeaways and reflections from the day's scientific and patient-driven insights.

6:30 - 8:00 PM
Outdoor Fire Pits & Sunset Social Hour

• An informal evening gathering for continued discussion, networking, and relaxed community connection.

Patient Wellness Track | Friday 

*Patients can choose to stay in research sessions or switch to wellness session track.

1:50 - 2:20 PM
CMT Speed-Friending

• Fast-paced, fun conversations designed to spark new friendships and peer support.

2:20 - 2:55 PM
OT & Workplace Accommodations

• Practical guidance on advocacy, disclosure, accessibility, and navigating work life with CMT.

3:00 - 3:30 PM
CMT Movement - Pilates or Cupping & Vibration Plate Experience

• Choose gentle movement for strength and flexibility or hands-on techniques to support pain relief and circulation.

3:30 - 3:45 PM

Break

• Time to refresh, connect with vendors, and attendees.

3:45 - 4:15 PM
CMT Everyday Hacks, Gadgets & Helpful Tools

• A demo-style session sharing real-world tools, tips, and creative solutions that make daily life easier.

4:20 - 4:50 PM (Choose one)

CMT Paws-Abilities: How Service Dogs Support Life with CMT 
This session brings education and lived experience together to show how task-trained service dogs can support daily life with CMT-physically, emotionally, and socially.

Mind Over Muscle: Gentle Stretch, Breathwork & Relaxation
Wind down with seated yoga, stretching, and breathing exercises focused on relaxation and nervous system support.

5:00 - 5:10 PM
Closing Remarks

• Key takeaways and reflections from the day.

6:30 - 8:00 PM
Outdoor Fire Pits & Sunset Social Hour

• A relaxed fireside gathering focused on connection, conversation, and community.

8:00 - 9:30 PM
Movie Night: Popcorn & Pajamas

• A cozy, family-friendly movie night open to all attendees.

Saturday, April 18, 2026 | Day 2 - Independence, Innovation & Celebration

8:00 AM - 6:00 PM
Surgery & Bracing Evaluations (By Appointment Only)

• Personalized consultations focused on surgical planning, bracing solutions, gait support, and optimizing comfort and independence with CMT.

8:00 - 9:00 AM
Breakfast (Included)

• Enjoy a relaxed sit-down breakfast before another full day of learning, connection, and celebration.

9:00 - 9:30 AM
Welcome & Patient Stories

• Inspiring reflections highlighting resilience, creativity, and shared progress within the CMT community.

9:30 - 10:15 AM
CMT Speed-Friending

• Another opportunity to build connections and strengthen peer support.

10:20 - 11:00 AM
Live Bracing Demo & Orthotic Innovations for CMT

• Hands-on demonstrations showcasing modern AFOs, smart braces, and comfort-focused mobility solutions.

11:00 - 11:45 AM (Choose one)
Adaptive Travel, Outdoors & Sports, or CMT Nutrition & Nerve Health

• Learn adaptive strategies for travel and recreation-or learn how nutrition supports nerve and muscle health.

11:50 AM - 12:15 PM (Choose one)
Breathing Better for CMT or Adaptive Aerobic & Chair Exercise

• Focus on respiratory wellness or participate in accessible aerobic movement for all ability levels.

12:15 - 1:00 PM
Community Lunch, Vendor Marketplace & Photo Booth 

• Enjoy lunch, explore adaptive brands, and capture memories with friends and family.

1:00 - 1:45 PM
CMT Surgery - Live Q&A

• An open, educational discussion addressing common questions and considerations around CMT-related surgeries.

1:45 - 2:00 PM
Transition to Support Circles (see below)

2:00 - 2:45 PM
Concurrent Support Circles

• Dedicated spaces for men, women, teens, kids, and care partners to connect and support one another.

3:00 - 3:45 PM (Choose one)
Made by CMT Hands - Creative Workshop or CMT & Sleep 

• Express creativity through hands-on projects or practical tools to improve sleep quality.

4:00 - 4:45 PM
Adaptive Driving & Vehicle Demonstration

• See adaptive vehicles, hand controls, and mobility technologies in action.

4:45 - 6:00 PM
Grand Finale: Adaptive Fashion Show, Raffle Drawings & Celebration

• An inclusive runway celebration featuring adaptive fashion, community models, raffle winners, and a joyful close to the Summit. To participate as a model, please email Estela Lugo - [email protected]

*Please note agenda subject to change.

*No refunds