Living with CMT

Teen Survey

by Estela Lugo | Aug 13, 2020 | Living with CMT

Hereditary Neuropathy Foundation is looking to expand our teen programs for ages 12–18. We hope to build an online community for teenagers and young adults living with CMT, so that they can connect with and learn from each other. We encourage parents and teens to...

HEREDITARY NEUROPATHY FOUNDATION (HNF) IS HERE FOR YOU DURING THIS TIME OF UNCERTAINTY

by Estela Lugo | Jun 22, 2020 | Living with CMT

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 has been...

Painting By Mouth – Kaileen Selig

by Estela Lugo | Jun 5, 2020 | Living with CMT

CMT doesn’t stop artist, Kaileen Selig from painting beautiful pieces using her mouth.

Spinning 4 CMT: My CMT Story

by Estela Lugo | Apr 12, 2020 | Living with CMT

MARC DAIGLE, 34 YEARS-OLD HOMETOWN: ST. CHARLES, MO CURRENTLY: NEW YORK CITY My CMT Story I have been an active person my entire life. I’ve completed 6 marathons, 2 Ironmans, 2 half Ironmans and multiple other races. In 2016 while I was training for the NYC...

Rishi Sharma CMT 2A Wheelchair Rugby

by Estela Lugo | Apr 11, 2020 | Living with CMT

I am Rishi and I have CMT2A. I was first diagnosed at two years-old. When my parents asked what could be done, they got the famous and horrific answer so many of us have gotten, “nothing can be done and there is no treatment. The disease is progressive and will only...

Meet the Kohler Family: Alana has GDAP1

by Estela Lugo | Apr 10, 2020 | CMT4 - GDAP1, Living with CMT

Written by: Ann L. Thompson Her big, warm smile and generous heart can melt metal. She used to dance. “Hi. I’m Alana Kohler. I’m 12 and I have CMT4A.” According to the Hereditary Neuropathy Foundation, CMT4 is a rare subtype of CMT (Charcot-Marie-Tooth disease), a...