The Ask: Fundraising Tips!

Idling outside a business in Charlotte, VT, I glance at my brother who is skimming his notes, “Owner’s first name is Phil. Started the company in 1984. My friend, Tina knows Phil’s wife, Patty because their kids ride horses. Got it. ” Then turning to me, with a smirk, he reminds me of my role, […]

Read More

The ASK – An Unbelievably True Story about CMT

          Idling outside a business in Charlotte, VT, I glance at my brother who is skimming his notes, “Owner’s first name is Phil. Started the company in 1984. My friend, Tina knows Phil’s wife, Patty because their kids ride horses. Got it. ” Then turning to me, with a smirk, he […]

Read More

Ironing Out the Wrinkles of Life-A CMT Story

“These shirts look fine. Why do I have to iron them?” Yohan asked with his serious face.  As he held the shirts at arm’s length and brought them closer to his eyeballs, squinting to make out the “wrinkles”, I pointed the way to the iron and ironing board. Still not game, he shared an idea, […]

Read More

CMTA STAR Research: Did You Know?

Neurologist: Well, he has CMT and yes, it gets worse over time. Me: Silence Neurologist: There is really nothing much you can do about it. Me – Silently feeling FREAKED OUT! Neurologist: Young man, at the beginning of the game, you are dealt a specific hand of cards. Some people receive a great hand, and […]

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

Meet the Funcle!

What’s a Funcle? A Funcle is a Fun Uncle, of course! Yohan’s Funcle Chris (my brother) is a whirlwind of energy, laughter, determination, and gusto.  Our families have remained close over the years, vacationing together, spending summers in Vermont, celebrating holidays together, etc. Here are just a few pictures to illustrate my point:     […]

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