Meet virtually with host, Julie Stone & fellow CMTers from all over the world for a fun and...
Blog Category
Living with CMT
Total posts in Category: 75
Pediatric CMT Natural History Study Enrollment Opening at Two Centers of Excellence
Pediatric CMT Natural History Study enhancement to their Charcot-Marie-Tooth (CMT) and Inherited Neuropathies (IN) patient registry, Global Registry for Inherited Neuropathies (GRIN).
HNF & Kenneth Raymond Join Forces to Clarify CMT Genetic Reports
Over 200 individuals have participated in hopes of receiving a genetic confirmation of their CMT symptoms. Although many have found a definitive diagnosis, many others have received their results as a variant of uncertain significance (VUS)
HNF Awarded 2023 Health Equity in RARE Impact Grant
HNF Awarded 2023 Health Equity in RARE Impact Grant For Spanish CMT PSA Awareness Campaign with Diagnosis & Patient Care Toolkit. The Hereditary Neuropathy Foundation is thrilled to announce that we are a recipient of the Global Genes Health Equity in RARE Impact Grant!
CMT-Associated Genes and Their Related Subtypes: The Definitive Guide
Kenneth’s groundbreaking book, CMT-Associated Genes and Their Related Subtypes: The Definitive...
Charcot-Marie-Tooth Virtual Support Group
The support group offers time to participate in a variety of both educations & open discussion meant to help everyone engage with others on similar journeys.
CMT Beyond Social Media: What is CMT Safe Space!
When searching for support and answers to CMT questions, social media can be very beneficial....
Charcot–Marie–Tooth Disease Symptoms
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.
She is at it, again! Jenny Decker’s “Just a Lap” circumnavigating the globe
She is at it, again! Jenny Decker’s “Just a Lap” circumnavigating the globe In 2016, Jenny kayaked...
The Key Role CMT Patients Play in Research
Without your participation, researchers won’t have the essential patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies. In addition, as GRIN grows, we gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies.
Moving Away From Perfectionism
The American Psychological Association (APA) understands perfectionism as the tendency to expect flawless performance from others or oneself over what the situation requires.
Alan Jackson Reveals He Has Charcot-Marie-Tooth, CMT
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 Summit (50)
CMT Update (73)
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CMT-Connect Webinars (9)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (2)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (2)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (7)
Webinars – Genetic Testing (1)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (2)
Webinars – Nutrition (1)
Webinars – Pain (4)
Webinars – Podcasts (1)
Webinars – PT and Exercise (9)
Webinars – Research and Clinical Trials (9)
Webinars – School and College (4)
Webinars – Surgery (2)
Webinars – Telemedicine (1)
Webinars- Emotional and Mental Health (5)
Community (1)
Faces of CMT (1)
Faces of CMT – Addie (2)
Faces of CMT – Bernadette (9)
Faces of CMT – CMT4A (7)
Faces of CMT – Grace (18)
Faces of CMT – HELP Fund (8)
Faces of CMT – HNPP Fund (3)
Faces of CMT – James (1)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (22)
GRIN Patient Registry (31)
HNF Team (10)
Industry (3)
Living with CMT (75)
Medical professionals (2)
Movement Is Medicine (16)
Optic Hereditary Neuropathy (5)
Our Impact (2)
Clinical Trials (15)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (12)
Breathing (3)
Canine Companions (5)
Cannabis (7)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (8)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (9)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (8)
Nutrition (3)
Occupational Thearpy (2)
Pain (6)
Podiatry (4)
PT and Exercise (24)
Research and Critical Trials (22)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (7)
Registry (11)
Research (85)
School Outreach Program and Team CMT Kids (1)
Special Events (1)
Bike New York (19)
Other Events (4)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (59)
The CMT Genie (3)
TRIAD (23)
TRIAD – Clinical Trial Readiness (2)
Vitaccess (1)
TRIAD – Research Gifts (0)
University of Helsinki (2)
Veneto (1)
TRIAD – Sponsored Research (0)
Burke Insitute (3)
University of Cambridge (1)
University of Miami (1)
University of San Antonio Texas (1)
TRIAD – Therapeutics (3)
Applied Therapeutics (8)
Pharnext (10)
Rarebase (4)
Types of CMT (0)
CMT Type – CMT1A (19)
CMT Type – CMT2A (6)
CMT Type – CMT2C (3)
CMT Type – CMT4A GDAP1 (2)
CMT Type – GAN (4)
CMT Type – HNPP (2)
CMT Type – MTRFR-C12orf65 (4)
CMT Type – SORD Deficiency (6)
Upcoming Events (1)
Ways to Give (4)
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