CATEGORIES: CMT Update

Now GRIN is Accessible in 141 Different Languages!

by | Mar 9, 2015 | 4 comments

The Global Registry for Inherited Neuropathies (GRIN) has implemented Google Translate.  Why did we choose Google?  Because Google is leading the way in teaching computers how to interpret meaning, avoiding the traditional method of decoding language.

Software that decodes language can turn ‘kindergarten’ into ‘children garden’.  Instead, “Google mines existing translated material, recognizes how words or phrases typically correspond, and uses probability to deliver the best match based on context”.1

Having the ability to communicate with patients in 141 different languages will hopefully result in more patients joining GRIN globally to prepare for future clinical trials, for example, Pharnext’s PXT-3003 phase III clinical trials for later this year.

1Ref: https://translate.google.com/

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Breaking News: First Therapeutic Gene Therapy to Treat an Inherited Neuropathy is Approved for Clinical Trial!

by | Mar 6, 2015 | , , | 9 Comments

The first disease community to receive a therapeutic gene to the spinal cord for an ultra rare inherited neuropathy is Giant Axonal Neuropathy (GAN). Congratulations to Hannah’s Hope Fund (HHF), a 501(c)3 public charity, which has driven this collaborative research in less than six years. Six million dollars has been raised to date to fund pre-clinical and clinical research on this rare disease.

A Rare Disease Patient That Does It All!

by | Dec 18, 2014 | | 2 Comments

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Hot Off the Press

by | Dec 16, 2014 | | 0 Comments

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.

by | Dec 15, 2014 | | 2 Comments

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

by | Dec 4, 2014 | | 0 Comments

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

by | Sep 16, 2014 | , | 2 Comments

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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4 Comments

  1. Mahmoud abdelazim
    Mahmoud abdelazim on March 18, 2015 at 4:50 pm

    I suffering from cmt “hereditary motor neuropathy”
    I hope to join research and clinical trials

    Reply
  2. Lesa
    Lesa on March 17, 2015 at 9:48 pm

    I have CMT in my hips legs and feet. Most of my mother’s side of the family has cmt and my grandmother’s side of family.

    Reply

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