I contacted that non-profit organization with 2 ½ employees and decided volunteering my time to CMTA would help me learn all I could about CMT, meet and work with others who lived with CMT and build community.
I started writing articles about Yohan and how CMT affected him and our family. I created a school-based program to teach kids about CMT in a fun, non-threatening way. The effects of this program helped Yohan’s peers put themselves in his shoes so they could empathize vs. sympathize with him.
Yohan was bullied quite cruelly in 3rd and 4th grade due to his apparent differences. Still, once the kids understood the reality of CMT, they courageously put judgment aside, suppressing their taunts in favor of support, compassion and collaboration.
At that time, the CMTA had a dozen loosely scattered support groups nationwide. I reached out to all the support group leaders and brought everyone together under the auspices of CMTA. Heck, I stepped up and started a branch in California myself to get the experience and resources needed to help everyone and anyone with CMT. In a blink of an eye, the groups grew from 12 to 75 across the country. There is strength in numbers, and we all worked collaboratively to reach as many people as possible, find resources for people with CMT and their families and get first-hand information from our lead clinicians about CMT.
After finding so many new people who wanted to get involved in growing CMTA, I got the green light to organize the first-ever Branch Leader Conference in Las Vegas where our CMT researchers, physicians and leaders from all over the country came together for educational seminars, bonding experiences and an overall sense of solidarity and mission to change the world for people living with CMT.
At this first branch leader conference, I met Jeana Sweeney, who had CMT, along with her young daughter, Rylee. Jeana shared my ideals, passion and determination and I discovered early on that this woman had a natural gift for fundraising! Our friendship has spanned over 20 years, and together, we maximized our creative freedom, innate talents and desire to change the world. We generated ideas, implemented projects and became movers and shakers of the CMTA community.
Jeana and I put together and organized Patient and Family conferences all over the US, inviting CMT experts to speak to CMT patients and providing the necessary information and resources to live well with CMT. We loved our work, the people, the community.
Jeana was hired by CMTA as Director of Community Services and I was asked to join the CMTA’s Board of Directors.
One of our branch leaders had the idea for a CMT Awareness Week, so we implemented that movement which successfully gained a lot of traction. The following year, Jeana and I decided CMT Awareness Week didn’t have enough meat, so we created CMT Awareness Month to help bring a greater understanding of illnesses and issues that affect people with CMT. Today, we celebrate CMT Awareness Month in September to fundraise for a cure, dispel myths, educate the medical community on how to diagnose CMT and spread the word, reaching out to friends or family members who are facing a CMT diagnosis. CMT Awareness Month has become a worldwide movement.
My husband, Gilles, always supported my efforts on Yohan’s behalf but remained a silent partner, encouraging me do my thing. When I joined CMTA, he was working as COO of Hewlett Packard and his time was sparse. We created the Yohan CMT Fund, to financially support the CMTA’s research efforts.
Gilles is an experienced mountaineer, skier and cyclist, so Yohan’s diagnosis was emotionally tough, but not insurmountable. Gilles’ adventurous spirit and longing to create memories with his only son turned into boys-only camping weekends and kayaking trips.
I am not a camper, more of a glamper, so I am happy Gilles took him for out of this world outdoor experiences, but of course, my anxiety seemed to sneak up on me. Gilles let Yohan find his own safety limits and boundaries. He encouraged him to do activities I would have immediately shunned for fear of injury.
After one of these crazy wilderness adventures, they came home tired, but so very happy and fulfilled. Yohan burst through the door, unusually excited to tell me all about their weekend.
First of all, I learned an ocean wave had snuck up on them, drenching his only pair of extra wide shoes, which contained his custom-made orthotics. The issue was not with the water; it was how Gilles tried to dry them. Thankfully he removed the orthotics before leaning the shoes up against the sticks of their campfire. The following day, they retrieved the shoes, but the soles had melted entirely off….ooooops!
Then they showed me the picture of the weekend – Yohan walking dangerously over a fallen tree high above the ground over a creek bed. I freaked out. Yohan was smiling ear to ear, as was Gilles. “What’s so funny?” I yelled. “You could have broken all your bones or even died out there!” That’s when they told me how they manipulated the camera angle to make it look much more dangerous than it was. Do I believe them? It does not matter. Gilles let him be free, allowing him to just be a “normal” kid, without the label of CMT hanging over his head. I admire my husband’s flexibility and willingness to find activities Yohan could embrace and physically succeed at. I conclude with the statement that our lives were never boring!