Join us for an enlightening summit session titled “Is CMT Surgery Right for You” with renowned orthopaedic surgeon Dr. Glenn Pfeffer. As Director of the Foot and Ankle Center at Cedars-Sinai Medical Center in Los Angeles, Dr. Pfeffer brings over 30 years of experience in treating foot and ankle problems in patients with CMT and has performed over 1000 CMT foot surgeries. HNF is excited to team up… Source ..read more

Click to Participate The CMT Biobank is now open! Are we coming to a city near you? Do you want to make a difference in CMT research? HNF is looking for patients with a confirmed CMT diagnosis to participate in the CMT Biobank. Your vital blood samples and de-identified GRIN data will be shared to develop cell models of all CMT subtypes, as targets for various… Source ..read more

Angie Roullier is the author of “Pot for the People: The plant, the people, and the shop policies of cannabis” – Cannabis Tutor/Patient Relations “Over 12 years ago, I chose to give cannabis a shot as a method of treatment for my CMT. Not only did I find that it greatly improved my quality of life, but I was now wildly curious about how it worked and how it could help others. Source ..read more

Unstoppable Skyler Fisher: Triumphing Across Continents with CMT Click to Support Skyler In the fast-paced world of para triathlons, one name stands out among the rest: Skyler Fisher, a dynamic 19-year-old powerhouse representing Team USA. Despite facing formidable challenges, Skyler’s indomitable spirit propels her to compete… Source ..read more

Therapeutic Research In Accelerated Discovery (TRIAD) partner Applied Therapeutics announces today positive results from the 12-month interim analysis of Govorestat (AT-007) in the ongoing INSPIRE Phase 3 Trial in Sorbitol Dehydrogenase (SORD) Deficiency. The INSPIRE trial is a Phase 3 double-blind placebo-controlled registrational study evaluating the effect of once-daily (QD) oral govorestat (AT… Source ..read more

HNF Contributes CMTRN Data to C-Path’s RDCA-DAP, Strengthening Research Capabilities for Inherited Neuropathies Integration of CMTRN data into RDCA-DAP promises new insights into Charcot-Marie-Tooth disease and related neuropathies, fueling advancements in treatment and care. TUCSON, Ariz., February 1, 2024 — Critical Path Institute (C-Path) is proud to announce a significant data sharing… Source ..read more

Do you have late onset autosomal dominant CMT2 – subtype unknown, with breathing involvement, unexplained cardiac complications, and/or congenital cataracts? A recent publication (http://tinyurl.com/mr3yp472) detailed a patient in the UK who presented in his 40s with progressive foot drop and falls. He had a normal birth and milestones, was very good at sports and had no symptoms earlier in life. Source ..read more

Make An Appointment JOIN GRIN Collaborative efforts between researchers, healthcare providers, and patients, facilitated by the Hereditary Neuropathy Foundation, has created a synergy that has accelerated the pace of discovery. Genetic testing not only benefits individual… Source ..read more

HNF is thrilled to announce that we have been accepted to host a 1-hour panel discussion during the Bio International Convention in San Diego, CA, in June 2024. The session titled “Revolutionizing Clinical Trials Patient Registries, Wearable Tech, and Video Capture” will include experts from the FDA, Novartis, Stanford University, Across Healthcare, and HNF Founder and CEO, Allison Moore. Source ..read more

CMT Biobank: We Need Your HELP! HNF is excited to continue collecting samples for researchers and industry to help develop treatments for CMT. CMT impacts the quality of life starting in childhood and is progressively debilitating. Currently, there are no treatments, but there are many potential therapies in the pipeline. There are still gaps in understanding the natural history of the disease… Source ..read more