We are excited to announce the launch of the Movement is Medicine™ Fitness Ambassador program, which will provide members weekly live classes that help increase their strength, balance, and overall fitness level.
Author Archive
Estela Lugo
SORD: A Lesson in Repurposing Drugs to Treat Hereditary Neuropathy
Research from a mutation on the SORD gene
TRPV4 Hereditary Neuropathy Patients Connect with Johns Hopkins Experts to Push Research Efforts Forward
Community connected with the TRPV4 HN team at Johns Hopkins
CMT1A Clinical Trial Update: Pharnext PREMIER trial of PXT3003
The PREMIER Trial, which is being conducted in patients with mild-to-moderate CMT1A, is expected to enroll approximately 350 subjects ages 16-65 with a confirmed genetic diagnosis of CMT1A.
Rare Disease Day “Living with CMT” 2022 Art Competition
Faces of CMT Photography Contest that represents challenges living with CMT and strategies to overcome them
Brace Yourself For Another Day
Ginnell McDonald interview on writing Brace Yourself For Another Day
HNF Launches NEW Virtual CMT Fitness Platform with Ambassador Instructors
Meet Marc Daigle, Christine Panico, Julie Stone who offer live classes
Mouse Models of Human CNTNAP1 Mutations: Strategies to Rescue and Restore Functions
Research with the Department of Cellular and Integrative Physiology UT Health San Antonio, TX
Act of Kindness: From Strangers to Instant Friends
On October 14, 2020, Winter School athletes in Wisconsin hit the Tuscobia Trail to raise much needed funding for HNF’s gene therapy program in support of Alana Kohler.
Free CMT Genetic Testing for a Common Axonal type of CMT to Prepare for Clinical Trial
A new type of Charcot-Marie-Tooth (CMT) has recently been identified caused by mutations in the SORD gene.
3 Reasons to Join the Global Registry for Inherited Neuropathies – GRIN!
What GRIN is and why you should join
How does HNF educate Healthcare Providers? Meet Elizabeth Katz Publisher, Neurology Review
HNF created a Continuing Medical Education (CME) course to educate neurologists of the various signs and symptoms of CMT
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Faces of CMT – Jaxson (7)
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GRIN Patient Registry (39)
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Movement Is Medicine (17)
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PFDD Meeting 28SEP2018 (5)
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Canine Companions (5)
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Registry (16)
Research (95)
School Outreach Program and Team CMT Kids (1)
Special Events (2)
Bike New York (19)
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Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (61)
The CMT Genie (6)
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Vitaccess (1)
TRIAD – Research Gifts (0)
University of Helsinki (2)
Veneto (1)
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University of Miami (1)
University of San Antonio Texas (1)
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Applied Therapeutics (10)
Pharnext (10)
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CMT Type – CMT1A (22)
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