Latest News from HNF
Stay up to date with our most recent news and updates on CMT and INs.
HEREDITARY NEUROPATHY FOUNDATION (HNF) IS HERE FOR YOU DURING THIS TIME OF UNCERTAINTY
As you know, HNF is monitoring the COVID-19 situation as it continues. Along with other organizations worldwide, we have postponed all in person events through the end of July and will continue to assess future in-person events, as necessary. The HNF team...
New Board Member, Lisa McCarthy
Through their decades-long friendship, Lisa was inspired by HNF's Founder/CEO Allison’s resilience and drive to help the CMT community live full lives and find a cure. After leading a Fast Forward session at the 2018 HNF Summit, Lisa felt compelled to get more...
Novel findings of a new common type of CMT2 that might be the 1st step to a treatment: SORD gene deficiency, the most common autosomal-recessive type of CMT
Dr. Stephan Züchner and colleagues at the University of Miami (Drs. Andrea Cortese, Grace Zhai, Andriana Rebelo), along with the Inherited Neuropathies Consortium (INC) – a group of CMT academic experts led by Dr. Michael Shy at the University of Iowa – has...
CMT & COVID-19 FAQ WITH DR. BACH
Respiratory weakness is only recently being acknowledged as a symptom of CMT so there is still a lot that we as patients need to learn regarding standard of care so that we (and our loved ones) can be our best advocates. Having CMT doesn’t necessarily put you in the...
Painting By Mouth – Kaileen Selig
CMT doesn’t stop artist, Kaileen Selig from painting beautiful pieces using her mouth.
The Global Registry for Inherited Neuropathies (GRIN) powers the Hereditary Neuropathy Foundation’s patient-centered research and drug discovery initiatives. Leading Charcot-Marie-Tooth advocacy organization’s innovative platform plays a critical role in its mission.
GRIN has played a critical role in identifying important issues related to the CMT patient experience, revealing new areas to explore and research.