CMT Update Banner Winter 2023

Hot off the Press: CMT Update

by | Feb 23, 2023 | 0 comments

As we start the new year energized and ready to continue our mission of bringing treatments and cures for CMT, we have rebranded our CMT Update newsletter to feature our lead research programs including the GRIN patient registry, the HNF-funded research milestones that have been met, and how patients can continue to participate in the process. The CMT Update will continue to be published quarterly.

Winter 2023 CMT Update 

  • HNF is Reshaping Drug Repurposing for CMT
  • Pharnext Unveils the Latest Progress
  • Is this Symptom Related to CMT?
  • Join the Global Registry for Inherited Neuropathies
  • CMT Genie and more…

Learn more on this topic

Related Blog Posts

Pharnext Announces Pleotherapy Proof of Concept in Charcot-Marie-Tooth Disease Type 1A

Pharnext Announces Pleotherapy Proof of Concept in Charcot-Marie-Tooth Disease Type 1A

PARIS, December 18th, 2014 – Pharnext SAS today announced the proof of concept of its pleotherapy research and development approach based on a proprietary network pharmacology platform that identifies synergic combinations of drugs already approved for other diseases. Indeed, Pharnext’s lead pleodrug, PXT-3003, has shown positive results both in preclinical and Phase 2 clinical studies published today in the Orphanet Journal of Rare Diseases.

A Rare Disease Patient That Does It All!

A movie script could not play out like this. There are very few occasions when a rare disease patient becomes the topic of a story that is truly uplifting. Often the stories are tragic or disheartening. That was not the case, however, with CMT patient Kim Goodsell.

Hot Off the Press

One of the ways that some CMT patients first become aware of their disease is when they are given a drug treatment for another disease. This is termed chemotherapy-induced neurotoxicity. Drugs such as paclitaxel and the vinca alkaloids that are widely used in cancer treatment cause severe peripheral neuropathy and in some patients this exacerbates CMT, revealing it perhaps for the first time.

Kara Q&A: How to “support” a friend or family member that’s affected with Charcot-MarieTooth.

My name is Courtney Hollett, Fundraising Coordinator at the Hereditary Neuropathy Foundation. This time of year I count my blessing daily and wanted to share with you a Q&A session I had with a new supporter of HNF. Kara, like myself has many family members affected with CMT and I reached out to her to share her thoughts and advice about how to “support” a friend or family member that’s affected with Charcot-MarieTooth.

Collaboration is the Key to HNF Success

Collaboration is the Key to HNF Success

We at HNF are so proud of the accomplishments of those scientists we fund and are asking you to please continue to support our efforts. Our Therapeutic Research In Accelerated Discovery (TRIAD) program is a proven collaborative model in the drug discovery process.

Sneak Peak of Fall Newsletter: CMT Research Study Survey

My name is Elizabeth Francisco and I am a graduate student from the Genetic Counseling program at the University of North Carolina Greensboro. I am inviting you to participate in a research study. The goal of my study is to learn more about the experiences of people with Charcot-Marie-Tooth (CMT) with genetic counseling and genetic testing. Adults with CMT and parents or legal guardians of someone of any age who has a diagnosis of CMT are eligible to participate

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