September 11, 2020September 11, 2020
Pharnext, CMT Association Partner on CMT1A Biomarkers to Support Phase 3 Study
News
Pharnext and the Charcot-Marie-Tooth Association (CMTA) have partnered to find new biomarkers associated with Charcot-Marie-Tooth disease type 1A (CMT1A), ... Read more
September 8, 2020September 4, 2020
When I Was a Kid, I Dreaded Gym Class
Columns, On My Own Two by Young Lee
Thoughts and memories of recess games and gym classes rolled into my mind last week as I flipped through ... Read more
September 8, 2020September 8, 2020
CMTA Turned Annual Camp Footprint Into ‘Empowered’ 5-Day Virtual Event
News
This summer, the Charcot-Marie-Tooth Association (CMTA) turned its annual Camp Footprint for children and teens with CMT disease into ... Read more
September 4, 2020September 4, 2020
CMT Research Foundation Calls for Action During Awareness Month
News
The CMT Research Foundation (CMTRF) wants to turn September from Awareness Month into “CMT Action Month.” This year, the foundation ... Read more
September 1, 2020August 28, 2020
My Grandmother Reminds Me to Give CMT a Fight
Columns, On My Own Two by Young Lee
My paternal grandmother turned 97 this week. As much as I would have liked to be with her to ... Read more
September 1, 2020September 1, 2020
Virtual Activities Abound for CMT Awareness Month in September
News
From participating in a virtual dog walk, to switching out Facebook photo frames, advocates are set to mark Charcot-Marie-Tooth (CMT) ... Read more
August 27, 2020August 27, 2020
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
News, syndicated
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search ... Read more
August 25, 2020August 21, 2020
The Wariness That Comes With Disability
Columns, On My Own Two by Young Lee
Although there are many words to describe the disabled experience, I’ve been thinking a lot about the word “wariness” ... Read more
August 18, 2020August 18, 2020
Extra PMP22 Gene Results in Toxic Clumps Inside Cells That May Drive CMT1A, Study Says
News
The extra copy of the PMP22 gene that causes Charcot-Marie-Tooth disease type 1A (CMT1A) leads to a potentially toxic ... Read more
August 17, 2020August 17, 2020
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
News, syndicated
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare ... Read more
August 11, 2020August 11, 2020
New Streaming Channel Showcases Rare Disease Films
News, syndicated
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers ... Read more
August 7, 2020August 7, 2020
$10,000 Community Grant Supports CMT Australia Youth Efforts
News
CMT Australia, a charity association aiming to raise awareness and empower people with Charcot-Marie-Tooth disease (CMT) to live their ... Read more

Pharnext, CMT Association Partner on CMT1A Biomarkers to Support Phase 3 Study

News

Pharnext and the Charcot-Marie-Tooth Association (CMTA) have partnered to find new biomarkers associated with Charcot-Marie-Tooth disease type 1A (CMT1A), the most common subtype of the disease, according to a ... Read more

September 8, 2020September 4, 2020

When I Was a Kid, I Dreaded Gym Class

Columns, On My Own Two by Young Lee

Thoughts and memories of recess games and gym classes rolled into my mind last week as I flipped through the pages of “The Ables,” a young adult novel by ... Read more

September 8, 2020September 8, 2020

CMTA Turned Annual Camp Footprint Into ‘Empowered’ 5-Day Virtual Event

News

This summer, the Charcot-Marie-Tooth Association (CMTA) turned its annual Camp Footprint for children and teens with CMT disease into a virtual experience. The unique initiative, which was launched by ... Read more

September 4, 2020September 4, 2020

CMT Research Foundation Calls for Action During Awareness Month

News

The CMT Research Foundation (CMTRF) wants to turn September from Awareness Month into “CMT Action Month.” This year, the foundation is seeking to turn awareness of Charcot-Marie-Tooth (CMT) disease into ... Read more

September 1, 2020August 28, 2020

My Grandmother Reminds Me to Give CMT a Fight

Columns, On My Own Two by Young Lee

My paternal grandmother turned 97 this week. As much as I would have liked to be with her to celebrate her birthday, I’m trying to limit my in-person contact ... Read more

September 1, 2020September 1, 2020

Virtual Activities Abound for CMT Awareness Month in September

News

From participating in a virtual dog walk, to switching out Facebook photo frames, advocates are set to mark Charcot-Marie-Tooth (CMT) Awareness Month, observed every September. Awareness and education are crucial ... Read more

August 27, 2020August 27, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

News, syndicated

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient ... Read more

August 25, 2020August 21, 2020

The Wariness That Comes With Disability

Columns, On My Own Two by Young Lee

Although there are many words to describe the disabled experience, I’ve been thinking a lot about the word “wariness” this week. Many of us in the disabled community are ... Read more

August 18, 2020August 18, 2020

Extra PMP22 Gene Results in Toxic Clumps Inside Cells That May Drive CMT1A, Study Says

News

The extra copy of the PMP22 gene that causes Charcot-Marie-Tooth disease type 1A (CMT1A) leads to a potentially toxic buildup of the PMP22 protein inside cells because the excess ... Read more

August 17, 2020August 17, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. ... Read more