Updated: Feb 18
Cure CMD’s next family conference won’t be until Summer 2021, but we encourage smaller, regional groups to meet between now and then - we may even be able to provide a small amount of funding to support a local event. Read below, and if you’re interested in holding a local event, reach out to us with your ideas.
Planning a local “chapter” event can be a simple way to connect with families, learn about current care and research, and stay active in the Cure CMD community. Here are the basic steps to planning a local event:
Decide on the type of event. Is it large or small? Social, educational, or both? Can you attach a theme, or “hot topic?” Choosing the type of event will both help you figure out what kind of planning and how much lead time it requires, and will spark attendee interest.
Choose a date. Planning 3-4 months in advance will provide the most flexibility for venues, vendors, and attendees, resulting in the highest engagement and attendance -- which will lead to a great event.
Secure a venue. Many popular venues fill up several months in advance, so again, at least three months’ lead time (and more like six, if you can) will ensure the highest venue availability and possible cost savings.
For smaller events, check out your local library, which might have free-to-use conference rooms perfect for seminars, panels, and talkbacks. Churches may have community rooms, too, that are accessible and free to use.
For a purely social event, parks or restaurants are a great place for families to meet. If it will be a small group, you could consider having it at your home (as long as it would be accessible for all).
Send a save-the-date. A head’s up to the community via email and social media will allow families to plan around the event. With more advance notice, attendees will benefit from lower-cost travel and flexible schedules, especially if the venue more than an hour or two away.
Invite a speaker. Researchers and clinicians may not always be available, but if your invitation is shared with clear expectations, you may have a better chance of recruiting a researcher to attend.
Your email could read something like: “Dear Dr. Smith, I am holding a regional event, sponsored by Cure CMD, on (date, time) at (location). Would you be willing to do half-hour presentation on (topic), followed by 30 minutes of Q&A?”
Make an effort to reach out to possible attendees. Who in your community would be interested in attending? Cure CMD’s Facebook page and the Congenital Muscle Disease International Registry (CMDIR) are great ways to connect with other affected individuals and families. Your neurologist could also pass on meeting information to other CMD families in the area, and Cure CMD would be happy to help with outreach to affected families in your area.
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