Dear Colleagues,
Medical research can be incredibly complex, requiring scientists to spend years mastering their fields. Yet one of the most important parts of science is the ability to communicate that work clearly to patients and families. When researchers and clinicians explain what they are doing, and why, it helps patients understand the approaches being taken to discover new treatments and cures for their conditions. Even more powerful is when patients and families actively participate in the process. Their insights often shape research priorities, ensuring that scientific efforts address the outcomes that matter most to those living with the disease.
This spirit of collaboration was on full display at the recent Nerve to Cure CMT Science and Social event held at the Roy Blunt NextGen Precision Health building on Oct. 4, 2025. Physicians and scientists welcomed a group of patients and families affected by Charcot-Marie-Tooth (CMT) hereditary neuropathies, a group of rare genetic disorders that cause progressive degeneration of nerves in the arms and legs.
The clinical and research team was led by clinician-scientist Dr. Ryan Castoro and scientist Dr. Kathryn Moss, both in the Department of Physical Medicine and Rehabilitation, along with Drs. Constatine Farmakadis (KU), Curtis Nutter (MU) and Kristina Kelly (MU). Together, they led interactive discussions that connected medical science with the lived experiences of patients and families. Through NextGen Precision Health, the University of Missouri has recruited leading experts in neuromuscular disease to advance understanding and pioneer new treatment strategies. The faculty participating in the Nerve to Cure event exemplify this strength, representing a larger group of investigators with diverse and complementary expertise.
Driven by a shared passion for accelerating progress in CMT research, Dr. Castoro and Dr. Moss helped spearhead this event as part of the university’s growing program in hereditary neuropathies. During the event, Dr. Moss also shared her personal story as both a scientist and someone personally affected by CMT, an experience that deeply resonated with patients and families. One of the most moving moments came when a patient shared that, despite living with CMT their entire life, they had never met another person with the condition until that day. It was a powerful reminder of the importance of connecting patients, researchers, and clinicians, especially for those living in rural Missouri, where access to specialized care and community can be limited.
At MU Health Care and the School of Medicine, our mission extends beyond advancing science. We are committed to bringing hope, connection, and cutting-edge care to patients across the state. The Nerve to Cure event exemplified that mission, blending discovery with compassion in a truly inspiring day of dialogue and shared purpose.
Sincerely,
Rick Barohn, MD
Executive Vice Chancellor for Health Affairs and Hugh E. and Sarah D. Stephenson Dean, School of Medicine
rbarohn@health.missouri.edu
