Therm-a-Rest Founder Offers Unforgettable Gifts to CMT Community

James Lea It was in the winter of 2012 that we met the elderly man sitting in a bulky hospital-style wheelchair, covered from shoulder to toe with a plush blanket. Jeana Sweeney and I had flown to Seattle, WA to speak at a local CMTA branch meeting. We had just begun the presentation when a […]

Read More

12 Compelling Reasons I’m Talking About CMT This September

Top Twelve Reasons I’m Talking About CMT during Awareness Month   12) Confused Faces-When I tell people my son has Charcot-Marie-Tooth disease, I get looks like this: Let’s stop the nonsense. I’m looking for reactions of recognition, like Dr. House’s below: 11) Dentures? Besides having had too many cavities, crowns, and pulled teeth, there is […]

Read More

Break the Silence: CMT Stories and Events

ARE YOU READY?           The Cycle (and Walk!) 4 CMT event at the Old Lantern in Charlotte, VT on Sunday, August 26 will be upon us before you know it! Please act now to reserve your spot to cycle, walk and/or attend the unforgettable after-party! Whether you are attending the event […]

Read More

CMT: So Much More Than Hands and Feet!

  “What’s up with the knee brace?” I asked 12-year-old Rylee, who was visiting from Pennsylvania for a couple of days. Head down, in a whisper, she told me, “My knee keeps popping out of joint. It hurts really bad when that happens. ” Just the thought of having my patella on the side of my […]

Read More

In Flora’s Memory – Just Say It! Again and Again and Again!

“My high school years?” she shuddered. “After the doctors diagnosed me with polio at 13-years-old, they wanted to straighten my misshapen feet. So, for the next 5 summers in a row, my school vacations were spent either in the hospital or at home, immobilized, with heavy plaster casts weighing me down.”  With raspy, uneven breath, […]

Read More

Raising Kids With CMT-Where In The Heck Is the Manual?

Last week, I purchased a top-of-the-line 4K LED Smart TV with enough options to bedazzle even the most technologically gifted.  Some of the features were intuitive enough that I proudly disregarded the instruction manual altogether.  To my dismay, I soon discovered that a good number of even the simplest functions were complicated, puzzling and downright […]

Read More

Seeking Alternatives to Narcotics: Cannabis

We are in the midst of an opioid overdose epidemic. As the laws on prescribing narcotics become stricter, the millions of people who suffer from chronic and debilitating pain are left to fend for themselves. Denied access to pain-relieving medication, those with excruciating conditions are suffering, searching for alternative forms of relief. It is in this […]

Read More