Many Faces of Moebius Syndrome

Hi it’s a real privilege to be part of the mfoms ambassador group, the privilege of wearing these uniforms is fantastic they are eye catching and unique (can’t wait to wear it!!) we are all proud and excited to fly the flag for this great cause….

Ever since I learned that there was a website dedicated too educating the public about Moebius Syndrome I have followed that site. I have learned so much on a syndrome that my grandson, Christopher has to live with. Thank you for having a place to learn and share Moebius stories.

I would like to say, that, I as a mother of a child with Moebius, am so greatly appreciative of what we have learned from the MFOMS community. We all share our ups and downs as we face them every day. It is so nice to not get judged for asking questions, sharing our struggles and just wondering of the what ifs. Some of us are far away but feel so close at the same time. I love that we can lean on each other when times are needed. We can share anything. We are all one big family!

When, at the age of twelve or thirteen, I first started researching Moebius Syndrome, there was almost nothing to be found. We are so fortunate now to be able to have more information and support, and MFOMS has definitely contributed to that. It means so much not only to be able to share my story with others affected by Moebius, but also to be able to learn from them, share experiences, and come together as a family. MFOMS truly makes that happen.

When I first did a scavenger hunt on the web for Moebius syndrome 15 years ago there was nothing to be found. I love the many faces of moebius syndrome website as it helps us raise awareness about a rare condition- it also lets families and persons with moebius know that they are not alone. The many success stories, the many trumphs and tribulations I believe this site is truly making a difference!

“I have met some amazing individuals and families these past years with Moebius Syndrome. Even tho Hannah is not with us physically today. She still remains a big memory to many people.” “When I was asked years ago to be apart of the MFOMS. I had no idea the impact it would have on my life and bring so much awareness to those who have suffered from lack of acknowledgement.” ‘Today we are here to all stand together, with the MFOMS. United we will be forever.’ It is a pleasure to call you all my family.’

It is very important to me to be an MFOMS Ambassador because it links my heart with my soul and brain to work for Moebius awareness day. I want to collect the data of the people with Moebius in Venezuela and South America. Let´s do a wonderful job. We can do it. Go Go Go.

“I like how the Many Faces Of Moebius Syndrome community and website unites all of us with Moebius Syndrome and gives us a goal to achieve. That is global awareness. And the more awareness that we raise, the easier the next people to be born with it will have it.”

“The MFOMS website is a great place to get started, not only in learning about Moebius, but also in learning more about the people who have it and actively becoming part of the community. As a person with Moebius Syndrome, I found it rewarding to be able to pull up pictures of other individuals around the globe who have the same disability as I have, because it instantly made me feel not so alone in my daily struggles. I also believe that the site is very professional in that it allows all viewers to provide active feedback, create new resources and continue to spread awareness for this rare illness.”