CMT Meet-Up September 30th at 1pm ET

by Courtney | Sep 7, 2023 | 0 comments

Meet virtually with host, Julie Stone & fellow CMTers from all over the world for a fun and interactive chat about all things CMT. Connect with valuable resources, experiences, tips, and new friendships! This will be a private and safe event (not recorded). Each CMT Meet-Up will focus on a topic that matters most to our community. For our first Meet-Up, we’ll be discussing CMT-related pain.

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Symptoms & Charcot-Marie-Tooth Disease

by Courtney | Jan 7, 2016 | Living with CMT | 1 Comment

Kuddos to our Inspire member HMBSusan! She initiated this important conversation in our Inspire Support Community. When HNF partnered with the Inspire Community, our mission was to encourage conversations just like this one.

Living with Charcot-Marie-Tooth: Leg Braces & Air Travel

by Courtney | Dec 17, 2015 | Living with CMT | 2 Comments

CMTers who use leg braces share their tips and best advice for air travel in our CMT Inspire Community.

We’re Here To Help: The Hereditary Neuropathy Foundation’s Healthcare Provider Directory

by Courtney | Dec 14, 2015 | Living with CMT | 14 Comments

The Hereditary Neuropathy Foundation is thrilled to announce the launch of the first online health care provider directory that has ever been offered to this community to include comprehensive testing to certify health care professionals (HCPs).

Tips For Living With Charcot-Marie-Tooth During The Holidays

by Courtney | Oct 29, 2015 | Living with CMT | 1 Comment

CMT patients can give themselves the best opportunity to stay healthy and happy this holiday season with these helpful tips.

One More Rep: Ed Moore Is Working Out For Charcot-Marie-Tooth Awareness

by Courtney | Oct 18, 2015 | Living with CMT | 0 Comments

Ed Moore, a Team CMT leader who is committed to spreading awareness of CMT with a pretty creative and bold fundraising strategy.

Charcot-Marie-Tooth Won’t Stop The ‘Karaoke King

by Allison Moore | Sep 23, 2015 | Living with CMT | 0 Comments

Patrick was an accomplished athlete in high school, participating in many sports and even boasting a 85mph fastball. But his deformed feet prevented him from running, eliminating any chance to pursue sports past high school.

Every Voice Makes A Difference: Social Media Awareness For Charcot-Marie-Tooth Disease

by Allison Moore | Sep 18, 2015 | Living with CMT | 1 Comment

it’s so important for you to join The Hereditary Neuropathy Foundation on all of our social media channels.

What It’s Like To Live With Charcot-Marie-Tooth Disease: The Stories Of Those Who Know It Best

by Courtney | Sep 7, 2015 | Awareness, Living with CMT | 10 Comments

The study is a collection of over 80 intimate and candid interviews, painting a vivid picture of those living with CMT. These interviews brought to light a range of different experiences: from devastating and heart-wrenching, to courageous and inspiring.

The Long Road to Diagnosis Renews Dedication to Advocacy

by Courtney | Jun 1, 2015 | CMT Type - CMT2C, CMT Update, Living with CMT | 7 Comments

Growing up we called it “Steffi disorder.” My friends and family were as baffled as my expert neurologists. I had been diagnosed with typical Spiral Muscular Atrophy (SMA) as a toddler but never followed its progression; I never seemed to get weaker. My myriad of symptoms was distinctly different than anyone else’s I had ever met in a lifetime living in the neuromuscular community. I thought I might never find my true diagnosis, let alone others who share it with me.

Making a difference in the CMT Community

by Courtney | Apr 21, 2015 | Bike New York, Living with CMT | 4 Comments

On May 3rd I will be in New York and participate in the TD Five Boro Bike Tour. I will be riding with Team CMT to raise awareness and help in finding a cure for CMT

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