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Welcome New Parents


Dear and family:

On behalf of the Many Faces of Moebius Syndrome Team, I would like to welcome you to the Moebius Syndrome Family! Receiving the unexpected diagnosis of Moebius Syndrome has probably left you with many questions, concerns and fears, as you begin navigating through this new and uncertain territory. We are here to help you navigate!

MFOMS has a private Facebook group called Moebius Friends Support Network that is made up of people who have Moebius, parents with children of all ages with Moebius, as well family members. Please reach out to join the MFSN group if you haven’t already done so. It is a valuable resource for the many questions you likely have. (Please make sure to answer the question as to why you would like to join). MFSN is a loving and accepting group of remarkable people who understand the challenges and concerns you may have. We will also be there to celebrates all the milestones and triumphs that you will have along the way.

MFOMS provides support for our Moebius community in many different ways.

  • We provide financial support for medical supplies.

  • We provide gifts to families in need during the Holiday Season through our Moebius Blessings campaign.

  • We provide animations and educational material to teach kids and adults about Moebius Syndrome.

  • We post Birthday cards on social media to our community members.

  • Our website hosts over 150 personal stories from the moebius community

  • Each year we host Riders for Moebius in Colorado to promote awareness and raise money for the MFOMS. In the fall of 2022, we will host our first Riders for Moebius in Las Vegas.

  • In August 2022 we will host Camp Moebius a in person community gathering in Indiana.

  • We promote Moebius Syndrome Awareness 365 days a year on our social media pages. From November 1st through January 24th we promote the Moebius Syndrome Season of Awareness. On January 24th we celebrate Moebius Syndrome Awareness Day which is an annual tradition MFOMS created in 2010 that continues to grow and raise awareness globally. We look forward to having you participate and raise awareness with us!

We welcome you to the family and would like to send you a welcome gift.  Please email you’re name, baby’s name, age, address and phone number to Kacie Nievesmassol at

Please remember we are here to assist you in any way we can. Welcome to the Family!

Andrea Smith

Executive Director of Many Faces of Moebius Syndrome


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