by Stephanie Carmody | Jun 1, 2015 | CMT 2C, Personal Profiles, Spring CMT Update 2015
Growing up we called it “Steffi disorder.” My friends and family were as baffled as my expert neurologists. I had been diagnosed with typical Spiral Muscular Atrophy (SMA) as a toddler but never followed its progression; I never seemed to get weaker. My myriad of symptoms was distinctly different than anyone else’s I had ever met in a lifetime living in the neuromuscular community. I thought I might never find my true diagnosis, let alone others who share it with me.
by Kerin Reilly | Jul 10, 2014 | Featured, Personal Profiles
My daughter Dakota is a force to be reckoned with, a strong willed, happy, smart young lady with a wit that could knock you off your chair with laughter. She’s had the personality of a leader since her very first day on the Kindergarten soccer field. Never one to be a wall flower but beautiful as a rose. The light she has carried around since birth is contagious and could brighten almost any situation.
That light dimmed a bit when, at age eleven, Dakota was diagnosed with CMT1A. We hadn’t the slightest idea what CMT was or where it had come from. It turned out that after some testing, we learned that my husband, Dakota’s father, has a mild case of CMT1A that was never diagnosed.
by Timothy Dixon | May 19, 2014 | Featured, Personal Profiles, Timmy Dixon
“FAITH, LOVE AND HOPE KEEPS TIMMY DIXON GOING!”
I often wonder what it’s like to be like everyone else out there. How great it would be to do things most consider easily accessible and within reach. I believe in myself; it’s not really about that. Sometimes I just feel alone, cold, and bitter after considering life in general. Then I ponder a thought: there are too many hurdles I’ve already jumped over
by Keri Calandro | Apr 1, 2013 | Awareness, Events, Featured, Personal Profiles
One Woman’s Success with Surgery The only thing Sarah Clauss has given up because of Charcot-Marie-Tooth (CMT) is waterskiing. “I live on the lake so I attempted waterskiing but…,” jokes the 25 year old, Lake Wallenpaupack, Pennsylvania resident, “it wasn’t pretty.”...
by COMMbits | Feb 25, 2013 | Personal Profiles
By: Will Sloan WoolwichObserver.com 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. “He found out last year, and I don’t think...
