Updates

March 21, 2019March 21, 2019
CMTA Plans Host of Events for Charcot-Marie-Tooth Patients, Caregivers

Several Charcot-Marie-Tooth Association (CMTA) events are planned in the coming months for Charcot-Marie-Tooth (CMT) patients and caregivers. The organization is hosting a live Facebook ... Read more
March 19, 2019March 15, 2019
When Dealing with CMT Symptoms, It’s OK to Improvise

Among the many symptoms of Charcot-Marie-Tooth disease is a decrease in hand dexterity. This crossed my mind a few months ago while I was ... Read more
March 18, 2019March 15, 2019
Maintaining a Positive Body Image

The Center for Eating Disorders defines body image as the “subjective picture or mental image of one’s own body.” It is how one feels ... Read more
March 18, 2019March 19, 2019
Researchers Report CMT2-causing Mutation in the EGR2 Gene

A new study reports a mutation in the gene EGR2 that caused Charcot-Marie-Tooth disease type 2 (CMT2) in an Italian family. The study, “A novel family ... Read more
March 14, 2019March 14, 2019
Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn

Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will suffer deeply if Britain leaves the European Union (EU), as ... Read more

Subscribe to our mailing list

Get regular updates delivered to your email box.

Thanks! Please check your email for a confirmation email.

Columns, On My Own Two by Young Lee

Pondering Questions of CMT and Identity
March 12, 2019March 11, 2019
A friend and I surprised each other recently. I casually mentioned that I have ...
News

Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
March 12, 2019March 12, 2019
With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn ...
News

Observational Trial Recruiting Participants to Identify New CMT-related Mutations
March 12, 2019March 12, 2019
A research project that is now underway and recruiting participants is intended to identify ...
CMT and Me - a Column by Jill Price, Columns

Navigating the Bleachers at My Son’s School Was Worth the Effort
March 11, 2019March 8, 2019
The other day, I had to climb the bleachers at my son’s high school. ...
CMT and Me - a Column by Jill Price, Columns

What Accommodations Are Available to Help My Son in School?
March 7, 2019March 6, 2019
At my son’s Individualized Education Program meeting, the team asked what accommodations he requires ...
News

ACE-083 Granted FDA’s Orphan Drug Status to Treat Charcot-Marie-Tooth Disease
March 7, 2019March 7, 2019
ACE-083 has been granted orphan drug status by the U.S. Food and Drug Administration (FDA) to ...

Leaning on Friends
March 5, 2019March 4, 2019
I don’t particularly like hiking. Steep inclines and unpaved pathways make me nervous. And ...
Elizabethtown College Student Seeks CMT Patients for Online Survey on Daily, Social Activities
March 5, 2019March 5, 2019
To better understand the effect of Charcot-Marie-Tooth (CMT) disease on daily living, an Elizabethtown ...
NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research
March 5, 2019March 5, 2019
US Survey Identifies Top Concerns Among Patients, Families Living with Neuromuscular Diseases
February 28, 2019February 28, 2019
I’ve Discovered the Importance of the CMT Community
February 26, 2019February 25, 2019
WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April
February 26, 2019February 26, 2019

What I Miss the Most
February 25, 2019February 21, 2019
Someone asked me what I miss the most since being diagnosed with Charcot-Marie-Tooth disease ...
Vienna to Host RARE2019 Meeting on Rare Diseases
February 21, 2019February 21, 2019
A Thank You to My Old AFOs
February 19, 2019February 19, 2019
StepWatch Activity Monitor May Be Effective Outcomes Measure for CMT Clinical Trials, Study Says
February 19, 2019February 19, 2019

Wow! I Have No Pain for a Change
February 18, 2019February 14, 2019
I recently realized that I have had no lower back pain for a few ...
Study of Altered Mitochondrial Connections Could Offer Insight About CMT2A Severity
February 14, 2019February 14, 2019
An Introduction to a New CMT Column: ‘On My Own Two,’ by Young Lee
February 12, 2019February 8, 2019

News

Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide
February 12, 2019February 12, 2019
Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities ...
CMT and Me - a Column by Jill Price, Columns

I’m Using Essential Oils to Help with My Symptoms of Charcot-Marie-Tooth
February 11, 2019February 7, 2019
The other day, I went to a class to learn about using essential oils. ...
News

FDA Grants Fast Track Designation to Pharnext’s PXT3003 for CMT1A
February 7, 2019February 7, 2019
Pharnext‘s PXT3003 was granted fast track designation for Charcot-Marie-Tooth disease type 1A (CMT1A) by the U.S. Food ...
News

New Cell Model Sheds Light on MTMR13 Enzyme’s Role in Myelin Production in CMT4B2
February 5, 2019February 5, 2019
A new experimental model of Charcot-Marie-Tooth disease (CMT) type 4B2 sheds light on the role ...
CMT and Me - a Column by Jill Price, Columns

Is My CMT ‘Invisible’?
February 4, 2019January 31, 2019
I saw something about invisible disabilities the other day. To me, that means a ...
News

FDA Revising ‘Draft Guidance’ on Developing Treatments for Rare Diseases
January 31, 2019January 31, 2019
The U.S. Food and Drug Administration(FDA) is updating its 2015 draft guidelines for drug ...

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

Subscribe to our mailing list

Pin It on Pinterest