We answer the most frequently asked questions about exercise for people with CMT.
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Neurotoxic Drugs and Charcot-Marie-Tooth Disease
Do you know about the dangers that neurotoxic drugs hold for patients with Charcot-Marie-Tooth disease?
CMT Personal Story: Chemotherapy and Charcot-Marie-Tooth
Learn how chemotherapy jump-started CMT in Karen’s body, leaving her in leg braces for several months.
Embrace the Brace: A Mother’s Perspective on Helios
We had the highest of hopes that these custom braces would be the difference between night and day for Dakota.
Quality of Life and CMT Research
Did you know that 95% of clinical trials fail? There are multiple causes, most related to efficacy or safety, which obviously can be harmful and risky for patients. The risk-reward of enrolling in trials is a judgment call based on the devastating effects of disease related to quality of life (QoL) or life-threatening disease. With CMT, the risk-reward is more of a challenging question for many, as CMT in most cases is non-fatal.
Foods That Help Muscle Recovery
If you have Charcot-Marie-Tooth, moderate exercise is usually best, especially when combined with a healthy diet.
Perception Shift
Throughout my life many different people have impacted my views on certain things, whether it be how I speak, how I dress, what I eat or even who I’m friends with. I now consider my viewpoint on life much more mature and sophisticated than it was 10 years ago or even 5 years ago. I think more logically than ever before and I am much wiser now because of my mistakes and because of my success. Recently in my life I met another person who greatly impacted my life.
Personal Stories: Triathlete, Trainer with Charcot-Marie-Tooth
In spite of high foot arches and trouble with balance, Joy von Werder of Winter Springs, FL has always been a runner and cyclist. She was also eager to participate in a triathlon. “The training and racing aspects really appeal to me,” she explained. There was one huge problem though. Joy didn’t know how to swim. “So there I was, 39 years old, taking swimming lessons from the boy who gave my little kids lessons,” Joy laughs, but her voice changes quickly as she describes her first race.
Member Alyson O’Connor Won’t Let Her CMT Stop Her!
Allyson O’Connor won’t let CMT get her down. She was unofficially diagnosed at the age of 10. Her Dad had the same symptoms, but at the time genetic tests were not available. Her diagnosis was based on an EMG. After having her two children, now age 8 and 6, she decided it was important to determine if she definitely had CMT.
From the words of a CMT Hero
“FAITH, LOVE AND HOPE KEEPS TIMMY DIXON GOING!”
I often wonder what it’s like to be like everyone else out there. How great it would be to do things most consider easily accessible and within reach. I believe in myself; it’s not really about that. Sometimes I just feel alone, cold, and bitter after considering life in general. Then I ponder a thought: there are too many hurdles I’ve already jumped over
Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.
Did you know that you can become part of a community in therapy development and further research for all forms of CMT and inherited neuropathies? The mission of the Global Registry for Inherited neuropathies (GRIN) is to collect clinical and genetic information from patients with ALL forms of Charcot-Marie-Tooth (CMT) and other related rare and ultra rare inherited neuropathies.
Using Zebrafish to Search for Therapeutics for CMT2A
Research on CMT is global, and covers both laboratory and clinical studies. It is critically important to be aware of what is happening elsewhere as well as in the USA because it can have implications for what we do and fund at the HNF.
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Faces of CMT – HNPP Fund (3)
Faces of CMT – James (1)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
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GRIN Patient Registry (39)
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Medical professionals (2)
Movement Is Medicine (17)
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Clinical Trials (21)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
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Accessible Travel (4)
Bracing (11)
Breathing (3)
Canine Companions (5)
Cannabis (8)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (9)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (11)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (7)
Nutrition (3)
Occupational Thearpy (2)
Pain (8)
Podiatry (4)
PT and Exercise (25)
Research and Critical Trials (29)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (10)
Registry (16)
Research (95)
School Outreach Program and Team CMT Kids (1)
Special Events (2)
Bike New York (19)
Other Events (4)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (61)
The CMT Genie (6)
TRIAD (28)
TRIAD – Clinical Trial Readiness (5)
Vitaccess (1)
TRIAD – Research Gifts (0)
University of Helsinki (2)
Veneto (1)
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University of Cambridge (1)
University of Miami (1)
University of San Antonio Texas (1)
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Applied Therapeutics (10)
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Rarebase (4)
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CMT Type – CMT4A GDAP1 (3)
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CMT Type – HDAC6 (1)
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CMT Type – SORD Deficiency (9)
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