March 21, 2019March 21, 2019
CMTA Plans Host of Events for Charcot-Marie-Tooth Patients, Caregivers
News
Several Charcot-Marie-Tooth Association (CMTA) events are planned in the coming months for Charcot-Marie-Tooth (CMT) patients and caregivers. The organization ... Read more
March 19, 2019March 15, 2019
When Dealing with CMT Symptoms, It’s OK to Improvise
Columns, On My Own Two by Young Lee
Among the many symptoms of Charcot-Marie-Tooth disease is a decrease in hand dexterity. This crossed my mind a few ... Read more
March 18, 2019March 15, 2019
Maintaining a Positive Body Image
CMT and Me - a Column by Jill Price, Columns
The Center for Eating Disorders defines body image as the “subjective picture or mental image of one’s own body.” ... Read more
March 18, 2019March 19, 2019
Researchers Report CMT2-causing Mutation in the EGR2 Gene
News
A new study reports a mutation in the gene EGR2 that caused Charcot-Marie-Tooth disease type 2 (CMT2) in an Italian ... Read more
March 14, 2019March 14, 2019
Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
News
Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will suffer deeply if Britain leaves ... Read more
March 12, 2019March 11, 2019
Pondering Questions of CMT and Identity
Columns, On My Own Two by Young Lee
A friend and I surprised each other recently. I casually mentioned that I have Charcot-Marie-Tooth (CMT). And she revealed ... Read more
March 12, 2019March 12, 2019
Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
News
With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn screening, to vaccinations, gene therapies ... Read more
March 12, 2019March 12, 2019
Observational Trial Recruiting Participants to Identify New CMT-related Mutations
News
A research project that is now underway and recruiting participants is intended to identify new disease-causing genetic mutations in ... Read more
March 11, 2019March 8, 2019
Navigating the Bleachers at My Son’s School Was Worth the Effort
CMT and Me - a Column by Jill Price, Columns
The other day, I had to climb the bleachers at my son’s high school. I admit the prospect scared ... Read more
March 7, 2019March 6, 2019
What Accommodations Are Available to Help My Son in School?
CMT and Me - a Column by Jill Price, Columns
At my son’s Individualized Education Program meeting, the team asked what accommodations he requires due to Charcot-Marie-Tooth disease. He ... Read more
March 7, 2019March 7, 2019
ACE-083 Granted FDA’s Orphan Drug Status to Treat Charcot-Marie-Tooth Disease
News
ACE-083 has been granted orphan drug status by the U.S. Food and Drug Administration (FDA) to treat Charcot-Marie-Tooth (CMT) disease, the therapy’s ... Read more
March 5, 2019March 4, 2019
Leaning on Friends
Columns, On My Own Two by Young Lee
I don’t particularly like hiking. Steep inclines and unpaved pathways make me nervous. And sometimes it feels like I ... Read more

March 21, 2019March 21, 2019

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

News

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 webinar March 26 at 9 ... Read more

March 19, 2019March 15, 2019

When Dealing with CMT Symptoms, It’s OK to Improvise

Columns, On My Own Two by Young Lee

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 filling up on gas, and ... Read more

March 18, 2019March 15, 2019

Maintaining a Positive Body Image

CMT and Me - a Column by Jill Price, Columns

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 about their body, and can ... Read more

March 18, 2019March 19, 2019

Researchers Report CMT2-causing Mutation in the EGR2 Gene

News

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 with axonal Charcot-Marie-Tooth disease caused ... Read more

March 14, 2019March 14, 2019

Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn

News

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 scheduled, at the end of ... Read more

March 12, 2019March 11, 2019

Pondering Questions of CMT and Identity

Columns, On My Own Two by Young Lee

A friend and I surprised each other recently. I casually mentioned that I have Charcot-Marie-Tooth (CMT). And she revealed that I had never previously brought up the subject. We ... Read more

March 12, 2019March 12, 2019

Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

News

With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn screening, to vaccinations, gene therapies and euthanasia. But rare diseases and the expensive therapies needed ... Read more

March 12, 2019March 12, 2019

Observational Trial Recruiting Participants to Identify New CMT-related Mutations

News

A research project that is now underway and recruiting participants is intended to identify new disease-causing genetic mutations in Charcot-Marie-Tooth (CMT) disease patients. The goal of the observational trial (NCT01193088), ... Read more

March 11, 2019March 8, 2019

Navigating the Bleachers at My Son’s School Was Worth the Effort

CMT and Me - a Column by Jill Price, Columns

The other day, I had to climb the bleachers at my son’s high school. I admit the prospect scared me a little, not only because of the height factor ... Read more

March 7, 2019March 6, 2019

What Accommodations Are Available to Help My Son in School?

CMT and Me - a Column by Jill Price, Columns

At my son’s Individualized Education Program meeting, the team asked what accommodations he requires due to Charcot-Marie-Tooth disease. He has little impact from CMT, with the biggest issue being ... Read more