Driving
CMT Research
with the
Patient’s Voice
With your help support love
nothing is impossible!
Drive Research
Drive Research
Turn your symptoms into science
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Join Team CMT
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Pledge Monthly
Start your Monthly Gift of $10 today or consider the many other ways to give!
Research CMT
Research CMT
HNF has been conducting patient-focused research dating back to 2007.
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Gift a Birthday
Celebrate your birthday with a purpose! Start a Birthday CMT Fundraiser.
Welcome To The
Hereditary Neuropathy Foundation
Our mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support people living with CMT and their families with critical information to improve quality of life, and fund research that will lead to treatments and cures.
What is CMT?
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About HNF
Founded in the early 2000’s, HNF developed the Therapeutic Research in Accelerated Discovery (TRIAD) as a collaborative effort with academia, government, and industry to develop treatments for CMT.
In accordance with the FDA’s patient-focused drug development guidance for enhancing the incorporation of the patient’s voice in medical product development and regulatory decision making, HNF has developed a regulatory strategy to support FDA Guidelines to engage with industry early on and assist with collecting and submitting robust and meaningful patient experience data, and other relevant information from patients and caregivers, such as identifying what is important to patients.
HNF is actively committed to increasing awareness and accurate diagnosis of CMT and providing patients and families with critical information to improve quality of life.
From Our Blog
LATEST
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.
emBRACE it™ Episode #43
How do we honor the inevitable grief that comes with disability and establish healthy boundaries with those closest to us? Rachelle Friedman, aka “The Brainy Social Worker,” is a disabled therapist who understands that there’s no one-size-fits-all approach to healing....
CMT Safe Space – Best Shoes for High-Arched Feet?
CMT Safe Space - Best Shoes for High-Arched Feet? Thanks to all those who joined last week! Check out the latest topics on all things CMT:About CMT Safe Space When searching for support and answers to CMT questions, social media can be very beneficial. However, not...
CMT Highlight Reel: How does CMT data drive research using GRIN?
Kenneth Raymond provides an overview of why sharing CMT symptoms in GRIN is so important!
CMT Beyond Social Media: What is CMT Safe Space!
When searching for support and answers to CMT questions, social media can be very beneficial. However, not everyone is on social media, and not everyone feels comfortable asking questions that friends and family may see…especially if they are more private in nature....
Hypotonia & CMT
Hypotonia, or low muscle tone, can be caused by a variety of factors, including genetic conditions like Charcot-Marie-Tooth (CMT) disease
Interested in driving CMT research forward? We need you!
Interested in driving CMT research forward? Watch our new 7-min GRIN Demo video explaining the steps in creating and updating your GRIN account!
Bike for CMT Research | TD Bank Five Boro Bike Tour
HNF is thrilled to announce that we have been chosen as a charity partner for the TD Bank Five Boro Bike Tour for the 13th year in a row! This exciting event will take place on May 7, 2023, in the bustling city of New York. Riders will have the opportunity to traverse...
Featured
Bike for CMT Research | TD Bank Five Boro Bike Tour
HNF is thrilled to announce that we have been chosen as a charity partner for the TD Bank Five Boro Bike Tour for the 13th year in a row! This exciting event will take place on May 7, 2023, in the bustling city of New York. Riders will have the opportunity to traverse...
Webinar: Making Sense & Science of CMT Symptoms
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
She is at it, again! Jenny Decker’s “Just a Lap” circumnavigating the globe In 2016, Jenny kayaked around the Big Island to raise money for HNF’s Therapeutic Research in Accelerated Discovery (TRIAD) research program and to spread awareness for Charcot-Marie-Tooth...
Hereditary Neuropathy Foundation Launches New Website and Webinar to Support Charcot-Marie-Tooth Disease Research
HNF’s website provides CMT community, academia, and biotech industry a hub for exploring research, clinical trials, vital resources, and ways to get involved.
Featured Webinars
Webinar: Making Sense & Science of CMT Symptoms
How do we know if our symptoms are Charcot-Marie-Tooth Disease related, and how can we drive research to better answer this question?
CMT THRIVE Webinar – Cannabis & Neuropathy Webinar
Cannabis can be a safe and effective tool to reduce symptoms of neuropathy and improve patient quality of life.
Active Hands
Hear from Rob Smith, Inventor and Director of Active Hands and learn about these life-impacting products designed especially for people living with reduced hand function.
CMT-Connect Pain Webinar
New CMT-Connect Webinar Pain Series will focus on a particular type of pain, its common causes, available treatments and future treatments on the horizon.
UPCOMING EVENTS
Bike for CMT Research | TD Bank Five Boro Bike Tour
HNF is thrilled to announce that we have been chosen as a charity partner for the TD Bank Five Boro Bike Tour for the 13th year in a row! This exciting event will take place on May 7, 2023, in the bustling city of New York. Riders will have the opportunity to traverse...
TCS New York City Marathon
On November 5, 2023 – Runners will take on the marathon to support Charcot-Marie-Tooth Disease research.
TD Bank Five Boro Bike Tour
On May 7, 2023 – Riders will take on the streets of NYC free from cars and tackle the 42 miles to fund research for Charcot-Marie-Tooth Disease.