Updates

February 14, 2020February 14, 2020
Recurrent Stroke-Like Symptoms, Abnormal Brain MRI Findings May Signal CMTX1 in Women, Case Report Says

X-Linked Charcot-Marie-Tooth Type 1 (CMTX1) should be considered in the differential diagnosis of women experiencing recurring stroke-like symptoms, such as slurred speech and limb ... Read more
February 11, 2020February 11, 2020
FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar

The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. ... Read more
February 11, 2020February 7, 2020
I’m Alive and I Don’t Want to YOLO It Away

When I was in college, YOLO — the acronym for “you only live once” — became popular. I think it was supposed to be ... Read more
February 11, 2020February 11, 2020
New Gene Testing Tools Like WES Help in Diagnosing Rarer CMT Subtypes, Case Series Reports

New genetic technologies like whole-exome sequencing can be used to more quickly diagnose specific subtypes of Charcot-Marie-Tooth disease (CMT), helping patients avoid unnecessary treatments, a recent ... Read more
February 10, 2020February 6, 2020
Exercise Is Good for Us, So Let’s Get Moving!

“Movement is medicine.” I have heard this saying a few times, and I wondered what it was about. Years ago, doctors typically told Charcot-Marie-Tooth ... Read more

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News

With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus
February 7, 2020February 7, 2020
The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan ...
News

From Care Centers to Research Awards and Summer Camp, MDA Leads in Helping Others
February 7, 2020February 7, 2020
With about $18 million expected to be awarded in 2020 in grants supporting research ...
News

New GJB1 Mutation Cause of X-linked CMT in Chinese Family, Study Finds
February 4, 2020February 4, 2020
Researchers identified a mutation in the GJB1 gene as the genetic cause of X-linked Charcot-Mariee-Tooth ...
CMT and Me - a Column by Jill Price, Columns

Daddy Taught Me These Lessons About Life and CMT
February 3, 2020January 30, 2020
“Why does your dad walk like that?” a friend once asked me. At the ...
News

Some Patients with CMTX Show Cognitive Deficits, Study Suggests
January 31, 2020January 31, 2020
Some patients with Charcot-Marie-Tooth Disease type X (CMTX) exhibit cognitive deficits, such as difficulties ...
Columns, On My Own Two by Young Lee

I’m Happy to Be Back in a Back Brace
January 28, 2020January 24, 2020
There was a time during my childhood when in my mind, I was “Braces ...

Fat in Legs, Thighs, Could Be Useful Biomarker of CMT1A Severity, Research Suggests
January 28, 2020January 28, 2020
The amount of fat in leg and thigh muscles measured on magnetic resonance imaging (MRI) ...
Oh, No! I Have to Go Again!
January 27, 2020January 23, 2020
Do you ever have to rush to the bathroom? Are there times when you ...
Tendon Transfer Surgery May Minimize CMT-related Foot Drop, Study Suggests
January 24, 2020January 24, 2020
Chopsticks Remind Me of CMT and Disability
January 21, 2020January 17, 2020
HNF’s ‘Movement is Medicine’ Summit Unites and Encourages All with CMT
January 21, 2020January 22, 2020
Can Charcot-Marie-Tooth Affect Breathing?
January 20, 2020January 16, 2020

PXT3003 Improves Clinical Outcomes and Stabilizes Disease Progression in CMT1A Patients, Extension Study Shows
January 17, 2020January 17, 2020
Pharnext’s oral experimental treatment PXT3003 was found to be safe and effective for patients with ...
Mister Rogers Taught Me These Lessons About Managing CMT
January 14, 2020January 13, 2020
Common Mutations Linked to CMT in Southern Italy Highlighted in Study
January 14, 2020January 14, 2020
Celebrities with CMT Help to Raise Awareness
January 13, 2020January 10, 2020

Case Report Describes White Matter Lesions, New Mutations In CMTX
January 10, 2020January 10, 2020
Central nervous system (CNS) dysfunction, manifesting as reversible posterior leukoencephalopathy , was observed in ...
‘Mentionable and Manageable’: What Mr. Rogers Taught Me About CMT Advocacy
January 7, 2020January 6, 2020
First Portuguese Family Identified With CMT Type 2 Caused by NEFL Genetic Mutations
January 7, 2020January 7, 2020

CMT and Me - a Column by Jill Price, Columns

What I Learned Over the Last Decade
January 6, 2020January 2, 2020
It’s hard to believe that we are in a new decade. I have grown ...
News

Researchers Discover Novel Mutation in EGR2 Gene That Causes Severe CMT Type 3
January 3, 2020January 3, 2020
A newly discovered mutation in the gene EGR2 causes a severe form of Charcot-Marie-Tooth disease ...
News

CMTA Donors Pledge $100K for Matching Donations to CMT1A Research
December 20, 2019December 20, 2019
With a $100,000 match pledge to CMT1A research, longtime Charcot-Marie-Tooth Association (CMTA) supporters Seth ...
News

Intermediate CMT Rates are Higher in Southeast China, with Later Onset for Type 1A, Study Suggests
December 17, 2019December 17, 2019
Charcot-Marie-Tooth disease (CMT) patients from southeast China have higher rates of intermediate CMT, and ...
CMT and Me - a Column by Jill Price, Columns

It’s OK to Have a Bad Day Now and Then
December 16, 2019December 12, 2019
Meeting a new neurologist is always an adventure. My son and I recently had ...
News

Gene Therapy Takes Center Stage at 2019 NORD Summit
December 10, 2019December 10, 2019
With so much recent publicity surrounding gene therapy, it’s no surprise that the topic ...

September 22, 2017September 22, 2017

Despite Functional Limitations, Few CMT Patients Receive Physical and Occupational Therapy

News

Most people with Charcot-Marie-Tooth (CMT) disease do not receive physical or occupational therapy, despite having extensive problems with physical functioning that limit mobility and quality of life, according to a report presented at the American Association of Neuromuscular & ... Read more

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