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4 weeks ago | 
charcot-marie-toothnews.com | Lindsey Shapiro |Young K Lee |Andrea Lobo |Vanda Pinto
Wearable sensors used in the home effectively captured data on physical function that correlated with measures of disease severity taken in the clinic for adults with Charcot-Marie-Tooth disease (CMT), data show. Such remote monitoring tools can aid in understanding how CMT affects patients in daily life, and may supplement evaluations for assessing treatment effects in clinical trials.
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1 month ago | 
charcot-marie-toothnews.com | Young K Lee |Patricia Inacio |Andrea Lobo |Somi Igbene
Managers, directors, and administrators are always discussing methods of inspiring high engagement among workers. Studies suggest that highly engaged employees are good for a company’s culture. Such employees are invested in their company’s goals, demonstrate good productivity, and are just good for business. However, I often wonder if some of us are so focused on producing what others expect that we forget to consider what we ourselves want out of our lives.
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2 months ago | 
charcot-marie-toothnews.com | Marisa Wexler |Young K Lee |Lindsey Shapiro |Patricia Inacio
The CMT Association is investing $423,000 in the Genesis database to help improve diagnoses of Charcot-Marie-Tooth disease (CMT). The investment, part of the association’s Strategy to Accelerate Research program known as CMTA-STAR, is intended to help researchers in identifying additional genes whose mutations are causes of CMT. “This CMTA-STAR initiative builds on our existing partnership with GENESIS,” Katherine Forsey, PhD, the association’s chief research officer, said in a press release.
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Jan 21, 2025 | 
charcot-marie-toothnews.com | Young K Lee |Lindsey Shapiro |Andrea Lobo
Many of us with Charcot-Marie-Tooth disease (CMT) have struggled to find medical professionals adept at working with patients like us. A good, productive patient-provider relationship requires effective communication, understanding, trust, and appropriate investment from all parties. Considering that recently, I had a revelation: This kind of dynamic also applies to personal trainers.
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Jan 15, 2025 | 
charcot-marie-toothnews.com | Lindsey Shapiro |Young K Lee |Patricia Inacio |Marta C. Figueiredo
The U.S. Food and Drug Administration (FDA) has granted orphan drug status to investigational oral therapy NMD670 to treat Charcot-Marie-Tooth disease (CMT).
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Nov 19, 2024 | 
charcot-marie-toothnews.com | Young K Lee |Somi Igbene
Those of us with Charcot-Marie-Tooth disease (CMT) know that it takes things from us in profound ways. For example, it chips away at our balance and leads to muscle atrophy. Because CMT symptoms often manifest in unpredictable ways, we can’t effectively plan for our future. As a result, many of us face a shorter health span than our able-bodied peers. This can lead to feelings of shame.
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Sep 24, 2024 | 
charcot-marie-toothnews.com | Young K Lee |Lindsey Shapiro |Andrea Lobo
I’ve often looked to my father as an example. That’s been true in many contexts, but it also includes his living well as a person with Charcot-Marie-Tooth (CMT) disease. From a young age, I’ve known that both my father and I have CMT. Throughout my childhood, I was neither aware of anyone else with CMT nor any disability advocacy organizations. So it was my father, whom I love and respect, who made CMT normal to me.
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Sep 5, 2024 | 
charcot-marie-toothnews.com | Young K Lee |Margarida Maia |Somi Igbene
Like many, I’ve enjoyed watching incredible athletes showcase their abilities at this year’s Paris Olympics and Paralympics. The Olympic Games always remind me of all the forms athleticism can take. There are countless sports out there that are all recognized as valid and worthy endeavors on a global stage. Each event is a unique celebration of what the human body can achieve with talent and considerable hard work. It’s cliché, but I find it inspiring.
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Sep 4, 2024 | 
charcot-marie-toothnews.com | Lindsey Shapiro |Young K Lee |Mary Chapman |Margarida Maia
For Charcot-Marie-Tooth (CMT) disease Awareness Month this September, supporters are taking to social media to put a spotlight on the relatively unknown neuromuscular disease. CMT is a group of diseases affecting the network of nerves throughout the body that are involved in sensation and movement. It is one of the diseases, affecting an estimated 126,000 people in the U.S. and 2.6 million people globally. Still, many others haven’t heard of it.
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Jul 23, 2024 | 
charcot-marie-toothnews.com | Young K Lee |Margarida Maia
Sometimes it feels like some of us live in separate worlds with different rules and dynamics. I’ve noticed this while chatting with friends, co-workers, and even strangers about Charcot-Marie-Tooth disease (CMT), my symptoms, and what it’s like living in a society not quite optimized for people with disabilities.
