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 reminds me of my role, “Okay, Let’s go. Remember, you look around the store and buy something, and when you are ready to make your purchase, find me and I’ll introduce you to the person in charge.”  And off we go – Chris with his Cycle 4 CMT flyers and his iPad, and me with my credit card.


Chris with chef, Maura O’Sullivan, at Penny Cluse Cafe  – a proud sponsor of the VT Cycle 4 CMT event!


Entering the store, Chris will ask for “Phil” while I  start browsing. Chris does his thing, I do mine and he usually walks away with a sponsorship for the Cycle 4 CMT event. And me? I get in the car with a new shirt, a few gifts, and other amazing VT products, like Maple Syrup (If you don’t like maple, you might as well skip the trip to Vermont-and just give a donation. Everything, and I mean everything has maple in it.)

On a more serious note, asking for charitable contributions, even for a great cause like the CMTA, can feel scary and awkward, but if you are genuinely interested in people and truly believe in your cause, success is definitely attainable.   I’ve asked for a lot of donations over the past 15 years for the CMTA, but watching Chris in action raised has my fundraising IQ considerably. Here are a few takeaways:


The More You Know – Chris always does his research before walking into a store or business. He finds the owners’ names, reads about their backgrounds and tries to find a common link, interest, or point of contact. This commonality, once discovered, will definitely make the discussion and ensuing conversation flow more easily.

Description –  Keep it short, make it personal. After finding the key person, who might initially be a bit guarded (as would anyone when approached by 2 determined strangers on a mission), Chris makes and keeps eye contact when explaining the details of the upcoming event: 5th annual Cycle 4 CMT. Nephew has CMT or Charcot-Marie-Tooth, not Country Music Television. A disease that attacks the nerves. Loss of function of the hands, arms, feet, and legs. The event has raised a lot of money for CMT research, our sponsor list is growing every year. Then, he usually shows the person the event website, the list of donors and a few pictures of Yohan). Pictures are worth a thousand words.

Yohan and Uncle Chris

The Story –-As an avid cyclist, skier, hiker born and raised in VT, Chris professes, “I often wish I could spend a day skiing or cycling with Yohan. He used to snowboard, but that ended when he developed CMT-related back problems and his feet, so deformed, could no longer fit in a ski boot.” Remembering the disappointment, I too start to choke up. He continues, ” I wanted to help him, but how? And then it came to me – Why not put on a CMTA fundraiser in support of CMT research, connecting the passion and energy that Vermonters possess for outdoor activities? As a result, the Cycle 4 CMT was born in the summer of 2014.

Empowerment – Chris’ delivery is moving and heartfelt. He speaks with conviction and confidence, empowering others to be part of the movement to end CMT. And it works. Why? People feel a connection to Chris’s story, to Yohan’s journey and to our determination to raise the critical funds needed to get us to clinical trials.  Feeling our great sense of urgency, people want to take action and get involved in something bigger than themselves. Ultimately, giving back unleashes opportunity. potential and a powerful force of good in the world.


DSC_82183rd Annual Cycle 4 CMT 2016 Kevin
Kevin is more than a hero – he’s a superhero!


Thank You – You can never say it enough. We appreciate everyone involved with the Cycle (and Walk!) 4 CMT event, from sponsors to participants, and donors to volunteers. You are our heroes. It takes a lot of compassionate, kind, generous people to bring about change in the world and we are fortunate to have you by our side, fighting the CMT battle. Your involvement and consideration also provides promise and hope to the Yohans of the world who are deeply moved by the fact that you genuinely care.


So, when you approach someone for a donation, be confident and tell your story from the heart. What’s the worst that can happen? For diverse reasons, you may get a “no, thanks.” That’s okay. Don’t take it personally. Just know that you have succeeded in informing one more person about CMT.


Now, you have a few fundraising tools, so start a walk, a cycle, a sit-a-thon – whatever. Or, if you can’t do it this year, give to the Cycle 4 CMT.  If you cannot make it, we came up with a new feature: the VIRTUAL walk or Cycle.  Now anyone, anywhere can take part in the Cycle (and Walk!) 4 CMT. For more info:


PS: Just an FYI-This year, Chris joined in on the shopping spree. He ended up buying this top from one of our new sponsors – AJ’s Ski and Sports!! : I love visiting our sponsors!

3 thoughts on “The ASK – An Unbelievably True Story about CMT

  1. Sara Somers July 10, 2018 / 7:18 AM

    Love this article and the family commitment! I’ll have to try some of the strategies! xo


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