Page 16 - Branch Leader Guide

Charcot-Marie-Tooth
Association

member a little better. To finish the introductions, everyone in the group is asked to
introduce him/herself to a neighbor and to ask the neighbor few questions as they have
just seen demonstrated. It takes only a few minutes, but begins to bind the group
together.

Fourth, we light a candle. Because the group comes together to raise money to look for
treatments and a cure we light a candle to remind us of our hope for the future. The
candle reminds people of our long-term goals—treatments and a cure for the disease.
The candle sits up front and burns through the rest of the ceremony. Lighting the candle
signals the shift in our ceremony to our main speaker.

Fifth, we do the program with our special guest speaker, usually in a Q&A format. The
leader gathers questions in advance and asks them of the special guest speaker in a
conversational manner. Our speakers are not presenting PowerPoint slides, they are
having a conversation. As more of the basic questions are asked and answered, the
group itself gets more and more involved in dynamically asking questions of the expert.
This tends to be a lot more interesting than just watching a PowerPoint presentation.

Sixth, we officially end the program. We announce it is over, mention that we have
snacks and drinks, and encourage people to talk to each other, talk to the expert, and
enjoy their time together. We also ask for help cleaning up.

This simple structure matters. The difference in how the event feels is palpable. Try it
yourself; discover the power of ceremony.

Organize Informal Group Meetings and Outings

Members often want to meet more than just four times a year. Ask someone to set up
informal meetings three to four times a year for those who would like more interaction.
Picnics, holiday get-togethers and coffee-shop meetings are all wonderful ways to
encourage communication, bonding and friendships among members dealing with
similar issues. Another idea is to have outside get-togethers based on common themes
(parents with children who have CMT, teens with CMT, family support and CMT,
parenting issues, concerned grandparents, etc.).

Serve Refreshments

If your venue permits food and drink, the refreshment coordinator asks members to bring
snacks and drinks.

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