CMT Summit Patient Voices

by | Jul 8, 2025 | 0 comments

At the 2025 CMT Summit and Retreat in Nashville, the Hereditary Neuropathy Foundation (HNF) placed patient and care partner voices front and center. Through powerful firsthand stories shared on stage and in intimate breakout sessions, attendees experienced the raw realities of living with Charcot-Marie-Tooth disease—from childhood diagnoses and complex surgeries to caregiving challenges and the urgent hope for treatments. These deeply personal narratives didn’t just raise awareness—they fueled action, connection, and a shared commitment to changing the future of CMT.

"These hands were never the limitation. They were the miracle."

Presented by: Melissa Amalitano

Latest updates on the NMD670 Phase 2 SYNAPSE-CMT trial

Presented by: Thomas Holm Pedersen, CEO of NMD Pharma

CMT Took Her Father. She’s Determined It Won’t Take Her Future.

Presented by: Reagan Warren 

“Living with CMT is like walking through life in shoes two sizes too big.”

Presented by: Alana Kohler

What if the only thing standing between your child and a future was time?

Presented by: Lindsey Flynt

“So what’s your medical background? I replied, ‘Mother."

Presented by: Natalia Salejko

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