CATEGORIES: Featured | Newly Diagnosed

CMT Awareness Month 2023 Hope. Courage. Action.

by Courtney | Aug 30, 2023 | 0 comments

CMT Awareness Month 2023

Hope. Courage. Action.

This year, HNF is spotlighting 3 Key Pillars vital to CMT Awareness & Research success.

We invite you to choose from each pillar throughout this September to drive Impact That Matters!

1. Hope

Learn about our exciting, new CMT TRIAD research projects & emerging technologies.
View HNF webinars and patient resources for support across many topics.
Connect with others living with CMT! Register for our first virtual CMT Meet-Up hosted by Julie Stone. Register here.

Action

Book a CMT Genie call to learn more about genetic testing options for CMT.
Share CMT Awareness with HNF’s FB profile photo frame.
Co-Host a CMT Presents event at your company or organization.

Courage

Prepare for CMT Clinical Trials by joining GRIN and/or completing new surveys.
Book a Team CMT call to brainstorm fundraising event ideas with us.
Donate to CMT Research and support Impact That Matters.

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Great News From HNF TRIAD Industry Partner — Applied Therapeutics

by Courtney | Aug 2, 2023 | Applied Therapeutics, Clinical Trials, CMT Type - SORD Deficiency, Featured, Research, Research and Critical Trials, TRIAD, TRIAD - Clinical Trial Readiness, TRIAD - Therapeutics | 0 Comments

Applied Therapeutics, Inc. has announced that their drug candidate, AT-007 (Govorestat), has received orphan medicinal product designation

CMT-Associated Genes and Their Related Subtypes: The Definitive Guide

by Courtney | Apr 6, 2023 | Genetic Testing, Living with CMT, Newly Diagnosed | 0 Comments

Kenneth’s groundbreaking book, CMT-Associated Genes and Their Related Subtypes: The Definitive...

Charcot–Marie–Tooth Disease Symptoms

by Courtney | Mar 7, 2023 | Awareness, Living with CMT, Newly Diagnosed, Webinars - Newly Diagnosed | 0 Comments

Charcot-Marie-Tooth disease is one of several hereditary neuropathies that affect the peripheral nervous system. CMT affects about 1 in every 2,500 people, making it one of the most common inherited neurological disorders worldwide.

Webinar: Making Sense & Science of CMT Symptoms

by Courtney | Mar 3, 2023 | CMT-Connect Webinars, Featured, GRIN Patient Registry, Registry, Research and Critical Trials, Webinars - FEATURED, Webinars - Research and Clinical Trials | 0 Comments

How do we know if our symptoms are Charcot-Marie-Tooth Disease related, and how can we drive research to better answer this question?

She is at it, again! Jenny Decker’s “Just a Lap” circumnavigating the globe

by Courtney | Feb 23, 2023 | Faces of CMT, Featured, Living with CMT | 0 Comments

She is at it, again! Jenny Decker’s “Just a Lap” circumnavigating the globe In 2016, Jenny kayaked...

Hereditary Neuropathy Foundation Launches New Website and Webinar to Support Charcot-Marie-Tooth Disease Research

by Courtney | Feb 10, 2023 | Featured, GRIN Patient Registry, Research and Critical Trials | 0 Comments

HNF’s website provides CMT community, academia, and biotech industry a hub for exploring research, clinical trials, vital resources, and ways to get involved.

SORD Webinar – Part 2 – Clinical Trial Update

by Courtney | Oct 9, 2022 | Applied Therapeutics, CMT Type - SORD Deficiency, CMT-Connect, CMT-Connect Webinars, Featured | 0 Comments

Clinical Trial Update for SORD Deficiency – Applied Therapeutics – Dr. Shoshana Shendelman

How to get genetic Testing: The CMT Genie

by Courtney | Sep 10, 2022 | CMT-Connect, CMT-Connect Webinars, Featured, Genetic Testing, The CMT Genie, Webinars - Genetic Testing | 0 Comments

Trying to get a genetic confirmation of CMT can be overwhelming, and you might not have access to healthcare providers who are familiar with all the choices out there.

Pharnext Announces On-Schedule Completion of Patient Enrollment in its Pivotal Phase III Trial of PXT3003, the PREMIER Trial, for the Treatment of Charcot-Marie-Tooth Disease Type 1A (CMT1A)

by Courtney | Apr 29, 2022 | CMT Type - CMT1A, Featured, Pharnext, TRIAD - Therapeutics | 0 Comments

Pharnext Announces On-Schedule Completion of Patient Enrollment in its Pivotal Phase III Trial of PXT3003, the PREMIER Trial, for the Treatment of Charcot-Marie-Tooth Disease Type 1A (CMT1A)

Alan Jackson Reveals He Has Charcot-Marie-Tooth, CMT

by Estela Lugo | Oct 19, 2021 | Awareness, Featured, Living with CMT | 9 Comments

Following the recent interview of country music star, Alan Jackson, with Jenna Bush Hagar on the TODAY Show where he revealed that he has balance issues related to his CMT, Prevention magazine contacted HNF for more information about CMT. HNF Founder, Allison Moore was quoted in the article:

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CMT Awareness Month 2023 Hope. Courage. Action.

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