There’s nothing like a love story to warm up a cold February day and here’s one that should put a smile on your face and a glow in your heart. Fausto Birigazzi had always had a strong desire to get married and have a family but because he thought he could pass his CMT on, was pessimistic about the future.  He wanted to date women to find that right girl but nothing serious ever developed with the girls he dated… until he met Aida. 

Recently, while perusing the CMTUS Forums on Yahoo, HNF came across a flurry of email posts from a 33-year-old New Jersey man named Andy Garval, with a severe case of Charcot Marie Tooth disease, who bemoaned his doctor’s lack of care and wondered, “Is this as good as it gets?” He wrote about his frustrations in terms of getting responsive medical treatment and his feeling of being “at the end of his rope.” We decided to talk to him directly about his experiences, as we think many of you will relate to his frustrations and concerns.

Recently Batman icon Julie Newmar opened up publicly for the first time about having CMT.  HNF contacted her and we began talks about everything from living with CMT to the power of her positive life style. It turns out that in addition to a storied career as an actor and a dancer with killer, 33-inch-long gams once insured for $1 million by Lloyds of London, Ms. Newmar has built a fulfilling life as a world-class gardener, pianist, writer and business woman.  We were intrigued and wanted to get to know her better. 

Linda Crabtree tells us the lessons she has learned while running CMT International, one of Canada's premier Charcot Marie Tooth organizations.

Some of you might remember our newest columnist, Linda Crabtree. Linda founded CMT International in 1984 and for 18 years she and her husband, Ron Book, ran the organization out of their home offices in St. Catharines, Ontario, Canada - a stone’s throw from Niagara Falls.
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This week we received a story from Melinda Lang of Cohoes, NY.  Melinda wrote about the process of getting diagnosed with CMT and how her life has changed now that she is living with the disease.

This week, we spoke with Terri Eickel, HNF director, about her tireless efforts on behalf of people who have CMT and her upcoming participation in the HNF Spin-a-Thon, which is raising money for research aimed at finding a cure for this debilitating disease.
She told us, “A...

Recently, we spoke with Mary London, Office Manager/Membership Director for HNF. Two years ago, London joined HNF in an administrative capacity and, now, she quips, “I have my hands in almost every part of HNF as an organization.” London talks here about her inspiring wo...

Recently, we spoke with teenager Andrew Collins, a 14-year-old living with CMT in Longwood, Florida, with his parents and younger brother, Matt, who is 11 and ...

Jeanette Marie Bauknecht is a 38-year-old mother of four who lives in Grand Marais, MI, a tiny tourist town of about 300 on the shores of Lake Superior, located “110 miles from the nearest Wal-Mart,” quips Bauknecht.  Married for 19 years, Bauknecht is the proud mot...