I’d much rather be dressed up as a clown, complete with the red nose, oversized shoes, full face paint, and handing out balloons to kids all day than suffer through the agony of attending an upscale cocktail party. And before you ask, I’m not grappling with social anxiety, nor am I living like a recluse. In fact, I’m quite the extrovert and I thrive at parties. So, what’s the catch, you may wonder? It’s an unexpected culprit – my feet. For the past three decades, they’ve been my relentless tormentors, transforming every step into a torturous journey over hot coals. I even have a wheelchair tuc ..read more

Our Journey Our journey with the Charcot-Marie-Tooth Association (CMTA) began in 2001, soon after my 7-year-old son, Yohan, was diagnosed with CMT 1A. Known as a heritable peripheral neuropathy, CMT is a genetic disease usually passed down from generation to generation. Still, no one in our past or present families showed symptoms or had been diagnosed with progressive neuromuscular disease. We scratched our heads for months and wondered why his hands were weak, making writing, zipping, and buttoning difficult; why couldn’t he climb the monkey bars, ride a bike or fit into penny loafers? His i ..read more

Always 10 minutes late? Or do you prefer being 15 minutes early? Does your spouse always have to do yet another task before leaving the house? Are you and your family quarreling endlessly about when to leave for an on-time arrival? First, stop fighting! Then, explore the possible reasoning behind each person’s viewpoint. Get curious, ask questions, and try to understand why people behave as they do. A glimpse into the past is the first step in getting to where you want to go with a smile! It was a blustery winter afternoon in the San Francisco Bay Area; I was in my car’s passenger seat, waiti ..read more

The Power of Self-Awareness to Reach New Heights In Arda’s recent book, The Art of Becoming Unstuck, he likens life to a hot air balloon ride. Even though I’ve read the book twice now, I recently found myself exploring his analogy further into what it means to live life as if floating seamlessly along, enjoying the natural beauty and colorful landscape from a most spectacular vantage point.  Whether conscious or not of our inner quest for life, we all aspire to find purpose, achieve our goals, and live life to the fullest. Well, for some reason or another, we often fail to embrace our he ..read more

By Katerina B. “Can you please take your shoes and socks off?” asked the specialist. He wanted to see me walk down the hallway. It was a Tuesday morning back in the spring of 2018. I was seventeen, about to graduate from high school, and looking towards the next chapter, college. But there was a problem. I started experiencing nerve pain in my feet that quickly progressed, causing my body to have problems with standing or walking. Also, the fatigue I tried to ignore for years worsened. After weeks of waiting, I received a referral to a podiatrist. I hoped that there was an easy fix to my pain ..read more

  The Meaning of Life by Arda Ozdemir and Elizabeth Ouellette Why did you come to life? To fully experience every moment, Until you find your essence, that is who you are without the layers. Arda    Since I was 12, I’ve been relentlessly asking myself, “What is the Meaning of Life?” Even though many claimed this question was unanswerable, for some reason, a life without exploring this question was “meaningless.” Maybe deep down, I sensed that there was an underlying system to life. Well, how else does one explain nature’s delicate balance?  ..read more

In addition to providing services to adults with CMT, the CMTA provides services to children and teens who are also aware of the struggles that they face every day. Jonah Berger and his team have helped the CMTA transform youth into leaders and fulfill their dreams at Camp Footprint for nearly twenty years. His book The Strangest Of Places was published in 2021, and it is a collection of stories that will leave you laughing, crying, and inspired. As part of episode 18 of the CMTA’s official podcast, CMT 4 Me, Chris and Liz O. discuss Jonah Berger’s experience with CMT and his role with the CMT ..read more

(Written for Katerina’s CMT Blog: Beauty in the Pain: https://kballsmith.wixsite.com/blog) Who is Katerina? Katerina is a bright young college student living with Charcot-Marie-Tooth disease. Officially diagnosed at 17 years old, her symptoms progressed rapidly, leaving her little time to adapt to a physical disability, unrelenting fatigue, chronic pain, leg braces, and a wheelchair/scooter. Although her CMT symptoms pose many limitations, she’s a fighter and continues to go to college, dance, and play a big part in the CMTA’s new young adult community – Compass. She also is a talented writer ..read more

Eleven years ago, late CMTUS founder, Gretchen Glick, came to me with the idea of creating CMT Awareness with a week dedicated CMT. I loved the idea so the 2 organizations worked together to create an entire week of activities to get the word out about CMT We created posters, wrote email blasts, and asked our branch leaders to spread awareness through groups across the country. This first CMT awareness week was so successful, that we then dedicated an entire month to CMT awareness, and somehow, Gretchen got American radio host, Shadoe Stevens, to do a PSA about CMT. Listen to this 29-second cl ..read more

Get to Know the Hosts of the Official CMTA Podcast – CMT 4 ME – with Chris and LizO This episode is dedicated to Riley Ashe Don’t want to read a transcript? Listen to the CMTA’s Official Podcast, CMT 4 ME, here: https://cmt4me.buzzsprout.com/1849476/10962021-get-to-know-the-hosts-of-cmt-4-me-chris-and-lizo Chris and LizO: CMT 4 ME Podcast Comin’ at you! What do you get when you mix chaotic creativity with organized comedy? You get the #1 CMT Podcast available today: CMT 4 Me. Despite being polar opposites, this brother-sister team brings it all together in an exciting and informative series ..read more