EmBRACE It Podcast with Lainie Ishbia and Estela Lugo
January 9, 2020
We want our CMT viewers and listeners to feel like they can relate to us, and that it’s perfectly okay to be imperfect!
News & Stories
Patient stories from the Charcot-Marie-Tooth (CMT) community: lived experience, journeys, and voices featured by the Hereditary Neuropathy Foundation.
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Showing 25 to 36 of 55 in Stories
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Catching Up with Team CMT Member, Gabrielle Blakey
January 7, 2020
I felt like “The Little Engine That Could.” I decided that day that CMT does not define me, it’s just a part of me. Read Gabrielle's inspiring story here!
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Meet HNF’s Newest Team CMT Member, Lisa Mormann
November 1, 2019
"I may have Charcot-Marie-Tooth (CMT), but it does not have me."
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Mini Film “Date-Able”
June 10, 2019
What goes through the mind of a woman living with Charcot-Marie-Tooth as she braves the world of dating?
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“Take A Look At This Heart“
January 8, 2019
Love, Sex & Disability Revealed in Groundbreaking New Documentary by Ben Duffy
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StarWise Therapeutics & HNF Form A Strategic Alliance to Bring a NextGen HDAC6 Drug Therapy to CMT2A (MFN2) Patients
December 29, 2018
HNF has been committed to funding HDAC inhibitor research since 2014.
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CMT6 (c12orf65) “One gene, two diseases”
September 10, 2018
C12orf65 can present as two different types of diseases called CMT6 and Leigh’s Syndrome. Both diseases are caused by dysfunction of mitochondria, the energy factory of our cells, and are progressive and, many times, devastating.
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Mobi Mat
January 11, 2017
Join Brett Gray & Bernadette Scarduzio in their mission to bring accessibility to beaches across the US!
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Thermapool Therapy
January 11, 2017
Therma Pool therapy session and demo as they discuss the benefits of aquatic exercise for CMT and more!
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A New Mouse Model for Charcot-Marie-Tooth (CMT2)
May 27, 2015
We were recently informed that The Jackson Laboratory (JAX, a nonprofit biomedical research institution headquartered in Bar Harbor, Maine) had taken delivery and will be distributing a newly generated CMT-related mouse model. The new model expresses mutant mitofusin 2, a mitochondrial membrane protein involved in mitochondrial fusion and regulation of vascular smooth muscle cell proliferation.
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NYC bike ride to highlight rare neurological disorder
February 25, 2013
Five-year-old Aiden Kelly was diagnosed with Charcot-Marie-Tooth Disease (CMT) last April, but for the Wellesley boy, the impact of this rare disease has only revealed itself gradually.
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School Outreach Program and Team CMT Kids
February 21, 2013
HNF has added a new component to its successful School Outreach Program, aimed at deepening students’ understanding of disability as a difference that can be embraced as one part of a beautiful whole.
