CMT Support Action Group upstate NY

09/30/2019

Charcot-Marie-Tooth (CMT) Infographic!

Charcot-Marie-Tooth (CMT) Infographic!

It’s really hard to describe what CMT is to people. After about 2 minutes of trying to explain peripheral nerves, neuromuscular disease, genetic patterns and why your talking about a Tooth, e…

09/18/2019

Has Country Music Television Jumped the Shark? What you need to know about CMT…..

Has Country Music Television Jumped the Shark? What you need to know about CMT…..

  There is always country music tunes playing in the background at my mom’s house in Vermont.  This particular rainy summer day, we spent the afternoon dancing barefoot to Johnny Ca…

09/10/2019

Pharnext to Launch New Phase 3 Trial of PXT3003 for CMT1A

Pharnext to Launch New Phase 3 Trial of PXT3003 for CMT1A

Pharnext announced that it is preparing a new Phase 3 trial to further assess PXT3003 as treatment for CMT1A upon recommendation of the FDA.

09/03/2019

Study: Protein Transport in Eyes' Neurons May Have Implications for CMT

Study: Protein Transport in Eyes' Neurons May Have Implications for CMT

Understanding how proteins are transported in the nerve cells that connect the eyes to the brain may be relevant to Charcot-Marie-Tooth disease.

06/25/2019

CMT1A Disease Variability May Be Explained by New Gene Modifiers

CMT1A Disease Variability May Be Explained by New Gene Modifiers

New gene modifiers may explain why CMT1A patients sharing the same mutation have different symptoms at different degress of severity, a study says.

06/14/2019

UF Health patient first to receive new gene therapy for neuromuscular disease since FDA approval

UF Health patient first to receive new gene therapy for neuromuscular disease since FDA approval

Attention: https://bit.ly/2WwphDi to see a news video about Londyn Wright’s treatment. Visit https://bit.ly/2qFfvUk for a video about how gene therapy works.

05/27/2019

Cycle 4 CMT

Cycle 4 CMT

Join us for a cycling and walking event to fund CMTA treatment-driven, STAR research for a cure.

04/08/2019

NRG1 type I dependent autoparacrine stimulation of Schwann cells in onion bulbs of peripheral neuropathies

Ongoing research making progress

In contrast to acute peripheral nerve injury, the molecular response of Schwann cells in chronic neuropathies remains poorly understood. Onion bulb structures are a pathological hallmark of demyelinating neuropathies, but the nature of these formations ...

02/28/2019

People With Disabilities Are Entitled to a Free Lifetime Pass to National Parks

People With Disabilities Are Entitled to a Free Lifetime Pass to National Parks

If you or your child has a permanent disability you may be entitled to a free, lifetime pass to visit the National Parks and Federal Recreational Lands.

01/07/2019

Guilt Giving: Let Me Count The Ways

Guilt Giving: Let Me Count The Ways

I walked into the ice cream store, craving a scoop of malted milk ball deliciousness – in a waffle cone, of course. As the only bona fide paying customer in the shop, I expected quick and eff…

01/06/2019

Rare ‘invisible’ and inherited disease leaves adults with strength of a child - and 20,000 Brits remain undiagnosed

Rare ‘invisible’ and inherited disease leaves adults with strength of a child - and 20,000 Brits remain undiagnosed

CASES of a rare and incurable disease that leaves adults with the strength levels of children are on the rise – with up to 20,000 Brits undiagnosed. Experts believe as many as 23,000 Brits ha…

01/03/2019

New Scale Assesses CMT Severity in Very Young Children, Researchers Say

New Scale Assesses CMT Severity in Very Young Children, Researchers Say

Read about the findings of a new study showing the development and validation of a scale to assess disease severity in children with CMT under 3 years old.

09/25/2018

charcot-marie-toothnews.com

Exciting & hopeful news

09/19/2018

News | CMT Research Foundation

News | CMT Research Foundation

Recent news about Charcot-Marie-Tooth research including clinical trials, medical research and treatments available for CMT

09/03/2018

It’s CMT Awareness Month! How Much Do You Know About CMT?

It’s CMT Awareness Month! How Much Do You Know About CMT?

CMT Awareness Month Quiz – How Many Will You Get Right? Last year, I worked on a version of this quiz for CMT Awareness month. I decided to revamp the quiz by adding a few more questions, rep…