What Happens At Cooterfest, Stays at Cooterfest!

It was in the year 2010 that I finally had the opportunity to meet Ronnie Plageman Sr. in person. Our first encounter was at the first-ever CMTA Leader Conference in Las Vegas. We had had many phone calls over the years, and it was time to meet the voice behind the receiver, the man who […]

Read More

Surgery, Smurgery: What Are We Going To Do About That Facial Hair?

Same foot.  Same surgeon. Similar surgery. Different results!!!!!! The recovery experience, so far, has been nothing, and I mean nothing like the first surgery in June of 2016, which is the best news ever. And this is how I’m feeling about that: We took preemptive measures: The anesthesiologist beefed up the nerve block so it […]

Read More

Grateful For Cadavers – They Change Lives

UPDATE! Yohan had his second  7-hour surgery ( a redo of his left foot) on Wednesday, March 29 at Cedars-Sinai, in LA with Dr. Glenn Pfeffer. As you may have guessed, his first surgery was not successful. We will probably never really know why, but apparently, some of Yohan’s muscles in his lower leg were […]

Read More

Here We Go Again – Déjà Vu?

Second Surgery, Same Foot I started writing this post last night, as a way of  getting my feelings out and on “paper.” But, the more I wrote, the worse  I felt. I shut down my computer and used my “call a friend” coupon. When feeling blah, I usually hide in a shell, stick my head […]

Read More

CMTA: Turning Science Into Therapies

On Saturday, March 18, the CMTA put on a Patient/ Family Conference in collaboration with the University of Miami. We had a wonderful turnout, with people from all over the world in attendance. Gilles Bouchard, the CMTA’s Board Chair, explained progress to date on CMTA-funded research. I wanted to share my notes with You!   […]

Read More

The Inside Scoop: The Real Story Behind Bethany’s Book, “How Should a Body Be”?

One day about 7-8  years ago, I get this random call from a young woman from Michigan. She wanted to volunteer with the CMTA. “Sure!”, I said enthusiastically. “We are always looking for volunteers-ALWAYS!”  Now, compared to my loud, overly animated voice and my quick speaking conversational style, my new friend, Bethany, spoke slowly, methodically and […]

Read More

My Brother, Anand

As the video pans out, pain sears through my body as I watch him “walk.” Feeling somewhat queasy, I cannot take my eyes off from this young man living in Kolhapur, India as he carefully crosses the colorful and well-kept room with his thin CMT legs and horribly twisted feet. Each cautiously placed step reveals […]

Read More