1-855-HELPCMT (435-7268) [email protected]
Nominate yourself or a loved one as a CMT Warrior!

Nominate yourself or a loved one as a CMT Warrior!

Nominate yourself or a loved one as a CMT Warrior! HNF has featured a “CMT Weekly Warrior” for the past few months on our social media platforms. This has consisted of a photo and summary to celebrate the brave individuals living with CMT. During the month of...
Support CMT Therapeutic Alliance

Support CMT Therapeutic Alliance

Hereditary Neuropathy Foundation has spent the past seven years and over 1.3 million funding basic to early translational research and now the time has come to move these discoveries towards the goal to provide treatment options for patients. HNF has entered into a...
Breaking News: First Therapeutic Gene Therapy to Treat an Inherited Neuropathy is Approved for Clinical Trial!

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

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.

PARIS, December 18th, 2014 – Pharnext SAS today announced the proof of concept of its pleotherapy research and development approach based on a proprietary network pharmacology platform that identifies synergic combinations of drugs already approved for other diseases. Indeed, Pharnext’s lead pleodrug, PXT-3003, has shown positive results both in preclinical and Phase 2 clinical studies published today in the Orphanet Journal of Rare Diseases.

The Hereditary Neuropathy Foundation and BioPontis Alliance for Rare Disease Partner to Develop Treatments for Charcot-Marie-Tooth

The Hereditary Neuropathy Foundation and BioPontis Alliance for Rare Disease Partner to Develop Treatments for Charcot-Marie-Tooth

BioPontis Alliance for Rare Disease and the Hereditary Neuropathy Foundation (HNF), both philanthropies, announced today the creation of a joint venture to develop drug candidates for the treatment of the rare disease known as Charcot- Marie-Tooth (CMT) Disease.

BioPontis Alliance announced its alliance model earlier this month. Today’s partnership announcement with HNF is a first demonstration of a collaborative model where researchers and all CMT dedicated organizations can come together for a common cause – treatments.

Sneak Peak of Fall Newsletter: CMT Research Study Survey

Sneak Peak of Fall Newsletter: CMT Research Study Survey

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

Building Awareness on CMT and Supporting the Patient  Community – HNF Announces Support from Pharnext

Building Awareness on CMT and Supporting the Patient Community – HNF Announces Support from Pharnext

HNFpharnext recently entered into a partnership with the French biopharmaceutical company, Pharnext, to help raise awareness of Charcot-Marie-Tooth (CMT) disease and support the CMT patient community through several initiatives. Building awareness is key! Pharnext’s support will assist HNF in distributing HNF’s CMT Update quarterly newsletter, enhancing the Global Registry for Inherited Neuropathies (GRIN), setting up activities for CMT September Awareness Month in the US and strengthening the CMT Inspire Community.

Embrace the Brace: A Mother’s Perspective on Helios

Embrace the Brace: A Mother’s Perspective on Helios

My daughter Dakota is a force to be reckoned with, a strong willed, happy, smart young lady with a wit that could knock you off your chair with laughter. She’s had the personality of a leader since her very first day on the Kindergarten soccer field. Never one to be a wall flower but beautiful as a rose. The light she has carried around since birth is contagious and could brighten almost any situation.

That light dimmed a bit when, at age eleven, Dakota was diagnosed with CMT1A. We hadn’t the slightest idea what CMT was or where it had come from. It turned out that after some testing, we learned that my husband, Dakota’s father, has a mild case of CMT1A that was never diagnosed.