Want to host an event? Let’s get started!
The Moebius Syndrome Foundation (MSF) encourages people to host informal gatherings in their area. Here are guidelines for hosting a local gathering for people and/or families with Moebius syndrome. Also check out our regional events page to connect with your regional coordinator and receive more information.
Contact info@moebiussyndrome.com to request an event toolkit and other materials for your event.
Local gatherings provide important support and connections to those in the Moebius syndrome community. They provide information and support to individuals with Moebius syndrome and their families and promote greater awareness and understanding of Moebius syndrome.
Any regional gathering should have someone hosting and organizing the event. This could be any interested adult or family willing to take on the responsibility of leading and organizing the event. The host will need to determine the site, decide what to do about food and drinks (potluck is one idea), have toys for children, and contact the MSF for materials and to invite members in your area. We urge any individual or host family to seek volunteers for assistance.
Possible locations include the home of the host family or a public place like a hospital, community center or house of worship. Try and have a balance of foods and beverages. Hosts should decide what would work best for them.
A date and time should be chosen well in advance and could be for a one-day event or a weekend.
Do you plan to view a film about Moebius, have a medically relevant presentation, or share medical experiences with others? Whatever you decide, make sure it is clearly described in your invitation.
The organizer can ask the MSF to send out a one-time e-mail or letter concerning their event to everyone on the MSF mailing list in the host’s state(s). The host should provide their name, e-mail, and phone number so respondents can contact the host directly. Hosts can also post their information on the MSF Facebook page and other social media sites. Hosts may e-mail info@moebiussyndrome.com to request the email invitations be sent to MSF members in the designated state(s).
Hosts may request complimentary materials such as brochures and any available promotional items for their event. To order materials, please send an email to events@moebiussyndrome.org to find out what is available.
Requests MUST be submitted at least two weeks before the event.
Be sure to take photos of your event! Please send them to events@moebiussyndme.org so that we may share them on our social media channels and in our newsletters.