Welcome New Parents!

Moebius Syndrome 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 those 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, as 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 that understand the challenges and concerns you may have; As well as celebrates all the milestones and triumphs that you will have along the way.

Although we do not offer medical advice we do have an extensive list of the top ranked children’s hospitals in the United States should you need to find one. Another great resource for parents is the Mom & Dad’s Moebius Syndrome private Facebook group run by Emily Calhoon a Moebius Mom.

January 24 is Moebius Syndrome Awareness Day which is the 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 similar to the above photo.  The business cards are helpful when visiting with doctors and specialists since this may be new to them, as well. If your living in the United States please email you’re name, address and phone number to Kacie Nievesmassol at kaciemassol@yahoo.com. If you’re living in the United Kingdom please email Alex and Erin Barker at alexbarker007@icloud.com. Please remember we are here to assist you in any way we can. Welcome to the Family!

Sincerely,
Andrea Smith
Executive Director of Many Faces of Moebius Syndrome

Email: Andrea@mfoms.org