Join the Cure CMT4J Foundation for their gala benefiting research into a rare and severe form of CMT. Semi-formal attire. Delicious Food & Cocktails Live Music Unique Performances Silent Auction for prizes such as vacation homes, sporting events and evenings Continue reading CMT4J “Dare to Be Rare” Gala
The 2017 RARE Patient Advocacy Summit brings rare advocates from across the globe together to Connect, Collaborate, and Activate. This educational conference creates a space for members of the rare disease community to share best practices, create important introductions, and Continue reading RARE Patient Advocacy Summit
This all-day event at Finn’s Taproom in Victor, New York will feature motorcycles, a gift basket and 50/50 raffle, a chicken dinner, musical guests Jester’s Alibi and The Occasional Saints, and a silent auction featuring a signed Kenny Chesney guitar. Continue reading Scavenger Hunt
The Hereditary Neuropathy Foundation will hold a Patient-Centered Pain Summit on November 3, 2017 in Cambridge, Massachusetts. The goal will be to come to an understanding of pain in the CMT/HNPP Community, including the impact on quality of life. Participation Continue reading Patient-Centered CMT/HNPP Pain Summit
Scientists have discovered that an “anti-sense” RNA (AS-RNA) is expressed after nerve injury to regulate how the damaged nerves rebuild their coating of myelin. That myelin, like the cladding around a cable or wire, is crucial for making nerves efficient Continue reading ‘Anti-sense’ RNA aids repair of damaged nerves
M. Laura Feltri, MD, professor of biochemistry and neurology, is leading research to determine whether a new family of molecules prevents demyelination and nerve degeneration in patients with peripheral nerve diseases. The research builds on her 2014 finding that the Continue reading Researchers Study Novel Proteins’ Role in Myelination
On June 17, 2017 in New York City, the Hereditary Neuropathy Foundation will be kicking off our inaugural Manhattan sunset cruise for a night filled with food, drinks, music and exclusive auction items. Enjoy dancing, full-service bars, lounges, floor to Continue reading Set Sail for CMT
For the eighth year in a row, the Hereditary Neuropathy Foundation will be participating as a Charity Partner in the 2017 TD Bank Five Boro Bike Tour! We are thrilled to again be a part of this extraordinary event where Continue reading TD Bank Five Boro Bike Tour
A combination of specific genetic mutations in Charcot-Marie-Tooth (CMT) disease that worsens peripheral nerve damage could be a helpful biomarker for predicting the severity of a given case of CMT, a Jackson Laboratory research team reports.
Either of two mutations impacting Scn8a — a sodium channel that is vital to the proper conduction of nerve impulses at the nodes of Ranvier — caused decreased sodium currents that led to severe neurological problems in the CMT mice, Burgess says. “These mutations, while innocuous on their own, can synergize with CMT-associated mutations to cause much more severe disease.” Continue reading Researchers Identify Mutations In Charcot-Marie-Tooth Disease That Worsen Peripheral Nerve Damage
Scientists have proved a 60-year-old theory about how nerve signals are sent around the body at varying speeds as electrical impulses.
Researchers tested how these signals are transmitted through nerve fibres, which enables us to move and recognise sensations such as touch and smell.
The findings from the University of Edinburgh have validated an idea first proposed by Nobel laureate Sir Andrew Huxley. Continue reading Nerve signal discovery backs Nobel winner’s theory