The 2026 CMT Summit: What We Built Together
Two days. One community that keeps growing.
The numbers from this year’s CMT Clinical Trial Readiness Summit tell a clear story.
96% of attendees rated their overall experience Excellent or Very Good. 93% said they would attend again. 98% said they would recommend it to someone else. 95% rated the sense of community Excellent or Very Good. 93% said the summit deepened their understanding of CMT. On a scale of 1 to 10, the average action score, meaning how motivated attendees felt to take meaningful steps after the event, landed at 8.7.
But no number captures what actually happened at Turf Valley Resort on April 17 and 18. That takes the voices of the people who were there.
“ALL. OF. IT. It Was Genuinely Incredible.”
That is how care partner Stefanie put it. And she was not alone.
“I got to see my husband stand for the very first time without support. ALL. OF. IT! It was genuinely incredible.” – Stefanie, Care Partner
“The true sense of community and belonging I felt with everyone there. The genuine connections and friendships made; feeling kindness and care from people sharing my experience.” – Zachary, Patient
“It renewed my sense of hope and made me want to get more involved with this community.” – Susan, Patient
“Getting together with other CMTers, sharing ideas, and knowing we are getting closer to the cure!” – Ann, Patient
“The community, the warmth, the support.” – Cathy, Patient
“Two days allowed a couple of meals and shared activities and real talk amongst new friends.” – Kathleen, Patient
“It was just great to see the CMT community together in one place.” – Stan, Patient
Connections That Last Beyond the Weekend
For many attendees, the most powerful thing about the summit was not a session or a speaker. It was the person sitting next to them.
“Forming strong connections with other peers was the most valuable treasure from this experience.” – Zachary, Patient
“I had the opportunity to meet in person the people I’ve been talking with online for years.” – Susan, Patient
“We met so many wonderful individuals and became close friends with a few people and they are going to be considered family in our eyes!” – Austin, Care Partner
“Tim and I became friends with a group around the same age as us. He has been texting occasionally with the man and I think that’s been so helpful for him because he feels more understood.” – Stefanie, Care Partner
“I met some beautiful people and we still talk and keep in touch. What a great experience.” – Bernadette, Patient
“Met people who were like me. This was my first experience with that. I enjoyed it.” – Dar, Patient
“My daughter said it made her feel normal for once.” – Cheryl, Parent
“Yes!!! Loved seeing children and parents meet each other and feel seen.” – Melissa, Patient
“It is a rare and wonderful thing to spend time with others who have similar challenges with the disease.” – Kathleen, Spouse
Two Days of Programming Built for the Whole Person
Friday and Saturday ran parallel tracks designed to meet attendees wherever they were: deep in the science, navigating daily life with CMT, or both.
The research track brought together leading voices from pharma, academia, and regulatory agencies to address where CMT science is heading. Sessions covered clinical trial strategy and FDA frameworks for rare diseases, promising Phase 2A trial results for a potential CMT treatment, AI-powered drug discovery and trial operations, human-on-a-chip platforms replacing animal models, whole-body MRI muscle analysis, new biomarker and wearable-based outcome measures, and the official launch of HNF’s CMT Cure Accelerator, a $10 million campaign to fund the infrastructure that will carry CMT from promising science to approved therapy.
The patient wellness track covered an equally wide range, from physical health topics like bracing, balance, nutrition, respiratory function, and sleep, to practical life skills like adaptive travel, workplace rights, adaptive driving, and everyday tools and gadgets that make living with CMT more manageable. Community-building was woven throughout, and several sessions created space for patients and caregivers to share their own expertise alongside presenters.
Both days also featured patient stories interspersed throughout, grounding the science in lived experience.
“All sessions were great. Especially the patient testimonials and stories interspersed throughout the meeting.” – Dan, Industry/Sponsor
“Each part was inspiring: patient stories were relatable, research was hopeful, and practitioners were inspiring.” – DaMarla, Patient
“The programming from sleep, yoga, breathing, diet, and more. It was so good!” – Brooke, Care Partner
“Seeing people try on the Blue Rockers for the first time. Lives were changed.” – Cathy, Patient
“It was exciting to hear how well the trial went and inspired me to participate in the next one if there is availability.” – Robin, Patient
“Hope that a treatment may be on the horizon.” – Kathleen, Spouse
Research at the Summit
The summit was not only a community gathering. It was a research event. 64% of survey respondents participated in at least one study, including:
- 64% in the CMT Biobank
- 44% in the hearing study
- 24% in the wearable and sensor study
“Participating makes me feel powerful. Like I’m taking some control of this disease. I especially loved taking the function test and finding out how I compared to last year.” – Elena, Patient
81% expressed interest in presenting at a future summit.
See You Next Year
“The care that the HNF team puts into cultivating a supportive, caring community while also moving leaps and bounds in research is remarkable.” – Liz, Patient
“We want people to leave the summit like we did: sad to go but excited for the next one, and ready to go home and continue to educate about CMT.” – Austin, Care Partner
The finish line is visible. The science is advancing, the community is growing, and what happens in that room every year is proof that something extraordinary is being built. We will see you next year.
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