Would you like to attend an upcoming Get-Together? Each event is hosted by members of the Moebius syndrome community.  If you are hosting an event and want to have your event featured, e-mail natalie@moebiussyndrome.org.

WANT TO HOST A GET-TOGETHER? LET’S GET STARTED!

The Moebius Syndrome Foundation (MSF) encourages people to host informal Get-Togethers in their area. Here are guidelines for hosting a local / regional gathering for people/families with Moebius syndrome.

OVERVIEW

Local Get-Togethers 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. The Moebius Syndrome Foundation sees these Get-Togethers as informal in nature. Please remember that the MSF cannot financially support any local or regional Get-Together.

HOSTS

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 it. 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.

CHOOSING A VENUE

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.

DATE AND TIME

A date and time should be chosen well in advance and could be for a one-day event or a weekend.

DEFINING THE PURPOSE

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.

PROVIDING CONTACT INFORMATION / MEETING INVITATIONS

The organizer of one of these gatherings can ask that the MSF send out a one-time e-mail or letter concerning their Get-Together, to all persons on its mailing list in the host family’s state(s). The host should provide their name, e-mail and phone for contact, and respondents will then contact the host directly. Hosts can also post their information on the MSF Facebook page and other social media sites. Hosts may e-mail marcia@moebiussyndrome.com to request the email invitations be sent to the members of the MSF in the designated state(s).

MATERIALS

Hosts may request complimentary material such as brochures and DVDs from the MSF for their Get-Together. To order any of these, please send an email to vicki@moebiussyndrome.com to find out what is available.

You can purchase items from the MSF for the event such as awareness wristbands or jewelry. To do so, submit your order and payment at least two weeks before the event. To order any these items, print the order form on the MSF website and submit it with your payment or contact newsletter@moebiussyndrome.com.

Be sure to take photos of your event, and send to newsletter@moebiussyndrome.com for Moebius News, our official newsletter.

Past Get-Togethers:

2016:

• San Francisco Bay Area – Moebius Syndrome Awareness Day 2016.
• Florida – Moebius Syndrome Awareness Day 2016.

2015:

• Virginia Moebius Syndrome Meet Up on Saturday August 8 2015 at Lake Curtis Park in Fredericksburg, Virginia. Hosted by Many Faces of Moebius Syndrome.
• Southern California: Saturday, July 18, 2015 – San Clemente Pier
• Florida: Moebius Syndrome Awareness Day Get-Together, January 24. Georgia: 1st Annual Smile With Your Heart Walk/Fun Day, January 24.
• Minnesota: Weekend of March 14th. Florida: Kissimmee, FL, Saturday January 18th.
• United Kingdom: 15th February at 2pm at the Trafford Centre in Manchester.
• Florida: Gainesville on February 22nd.