Charcot Marie Tooth Disease - CMT Disease - Hereditary Neuropathy

Over the years, people with CMT have proven themselves to be extremely motivated towards improving their quality of life and maintaining the muscle and its function for as long as possible.  There is quite of bit of evidence that suggests that exercise, bracing, and surgery can significantly preserve muscle and prevent deformity, thereby allowing the patient a quality of live that they would otherwise not have.   In addition, a positive mental outlook can yield great benefits, enabling people with CMT to be successful and happy in life despite their disease. Unfortunately, not much is known about how to do that and people with CMT often left guessing at their options.  This lack of knowledge is dangerous because it can lead to incorrect choices and inappropriate courses of action.  
 
As part of the TRIAD program, HNF will fund "Clinical Therapeutic Research," defined as research that will lead to improved therapies and a better quality of life for people with CMT.  Such research may include, but is not limited to, research on bracing, exercise,  surgery, and mental health strategies. At HNF, we believe that people with CMT deserve the best life possible and we are committed to helping make that happen.
 
BRACING - The Hereditary Neuropathy Foundation, Ortho Rehab Designs of Las Vegas, and the University of Nevada, Las Vegas, are partnering to study the effect that the Helios Brace has on the gait of persons with Charcot-Marie Tooth Disease and to develop a better understanding of its biomechanical performance. The study will examine the design of the brace and document its contribution to the improvement of gait. It will be directed by Dr. Edward S. Neumann, Director of the Center for Disability and Applied Biomechanics; Dr. Brendan O’Toole of the Department of Mechanical Engineering; and Dr Janet Dufek of the Department of Kinesiology. The study will be seeking research subjects to volunteer for data collection at the time the Helios is initially being fitted, and then again after approximately 10 weeks of adaptation. Both data collection sessions will occur on the campus of the University of Nevada, Las Vegas, and will consist of measurements of muscle strength, walking velocity, balance, and the patterns of force that the foot makes with the ground while walking. Pairs of instrumented braces will be fitted to several of the subjects, and lower limb movements recorded with an optical motion tracking system. To be eligible, subjects will need to be patients under the care of Ortho Rehab Designs in the process of obtaining the brace, and be able to return to Las Vegas for follow-up data collection.  Please click here to learn about participation requirements. 

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