Get Involved

Volunteer With the Moebius Syndrome Foundation

There are many ways you can help the Moebius Syndrome Foundation. Whether it is lending your voice, giving your time, sharing your story, or hosting an event, your help is greatly appreciated. Thank you for helping us achieve our mission!

How To Help

The Moebius Syndrome Foundation helps connect individuals with Moebius syndrome to one another, provides support for individuals and their families, coordinates conferences held every two years, and hosts virtual events throughout the year. Here are some ways you can become involved:

  • Share your story.
  • Volunteer at a conference.
  • Volunteer for a virtual event.
  • Become a regional coordinator.
  • Host a get together or an awareness event.
  • Be a Moebius Mentor.

Share Your Story

Be An Advocate

The Moebius Syndrome Foundation has extensive contacts within the national media. If you are interested in sharing your story, we can help you take the next steps. Share your story.

Submit to Moebius News

The official newsletter of the Foundation, Moebius News, is mailed out to all U.S. and Canadian members twice a year. Learn more about the newsletter.

Submit Content for Social Media

We are always looking for images of people with Moebius syndrome and their families for social media content and our newsletters. We are open to receiving videos as well. If you are interested in sharing your story or helping with content generation for social media, please email: Currently, we are in particular need of people with TikTok experience.

Become a Regional Coordinator

Regional coordinators host one event in their area of the United States on an annual basis. Email for more information.

Become a Moebius Mentor

Moebius Mentors help guide people through the experience of living with Moebius syndrome. Individuals with Moebius syndrome may mentor each other or a teen or young adult with Moebius syndrome. Parents of children with Moebius syndrome may also mentor fellow parents, and help guide them through the early diagnosis and treatment process. To volunteer as a Moebius Mentor, email:

Volunteers work the Moebius Syndrome Foundation conference registration desk in 2022

Conference Volunteering

The Moebius Syndrome Foundation puts on a conference every two years. While the Foundation’s staff and board help coordinate the details of the conference, we rely on volunteers to help us. We are always looking for presenters/speakers, volunteer photographers and videographers, donations for raffle items, and activities for kids (e.g., face painters, magicians, etc.). If you are interested in volunteering, please email:

Virtual Volunteering

The Moebius Syndrome Foundation hosts virtual events throughout the year. We need volunteers to host book club sessions for adults with facial differences, speakers/presenters on topics relevant to living with Moebius syndrome, and assistance with other projects. Please email for more information.

Host an Awareness Event

Moebius Syndrome Awareness Day (MSAD) is held annually on January 24. You can host an event in your area to help spread awareness of Moebius syndrome on that day, or whenever you would like throughout the year! We can provide party favors and informational items for your event. Email us at to get more information.