What is a Moebius Syndrome Foundation Champion™?
Moebius Syndrome Foundation Champions™ want to raise awareness of Moebius syndrome and promote the importance of rare disorders within their communities.
There are many different ways to raise awareness. Check out our toolkit below and find what meets your interests and abilities. We will host regular Webinar trainings, on a variety of subjects. Bookmark this page or like us on Facebook for information on upcoming events.
Would I make a good Moebius Syndrome Foundation Champion?
- A good communicator?
- Personally connected to the Moebius community (living with Moebius, have a friend or family member that is living with Moebius…)?
- Passionate about raising awareness of Moebius syndrome?
- Active on Facebook or other social media sites?
- Willing to learn new skills?
As a Champion, you will gain new skills and be able to create your own projects.
- Host an event for Moebius Syndrome Awareness Day or Rare Disease Day
- Class presentations
- Local fundraisers
- Share your story with the local media
- Draft a letter to the editor or write an article for your local newspaper
- Talk with your Congressperson or Senator about pending legislation
- Lead a discussion with your school’s parent teacher organization
More information will be available soon. If you are interested in serving as a Moebius Syndrome Foundation Champion, please fill out this simple form and we will contact you. Thank you!