Birthplace of the Global Moebius Syndrome Online Community

Kevin
Kevin is 12 years old and he loves YouTube!! He loves to watch videos full of emotions. He likes surprise military families, he likes to watch wedding speeches and anything that involves emotions or a party.
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Zayden
Zayden’s life started on 8/9/10. From the moment he was born, we knew he was special. He was an absolute surprise and survived the miscarriage of his twin at 10 weeks. We knew this little guy was meant to be here for a reason.
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Dakotah
Dakotah was born on October 15 2008 via an emergency C-Section. I was my daughters birthing coach. On October 15th we checked in for what was to be a normal delivery. After 15 hours in labor and Dakotah’s heart rate dropping several times over the course of the day it was decided that a C-Section was necessary.
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Ryan
On June 2nd, 2011 my husband James and I went into the hospital around 5 am. I was beyond ready to give birth and to see our sweet boy who had been very active the couple months before.
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Maggie
Moebius Syndrome was something I knew very little about until the age of the Internet. Being able to connect with people from all over the U.S. and throughout the world has been tremendously enlightening. There was a time, however, that I felt alone…
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David
I am a 6th year chemistry PhD student at Brown University. I am set to defend my thesis this upcoming April and graduate in May. I was born with Moebius Syndrome with defects to my abducens nerve limiting the peripheral movement of my eyes. I was also born with partial hands and no feet.
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Ivy
Ivy Stewart, she is 2 years old and from New Brunswick, Canada. She was born with bilateral clubfoot and had 19 weeks in castings followed by her braces.
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WHAT IS MOEBIUS SYNDROME?

Moebius Syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability tomove the eyes from side to side. Most people with Moebius syndrome are born with facial paralysis, which means they cannot close their eyes or form facial expressions. Limb and chest wall abnormalities sometimes occur with the syndrome. Most people with Moebius syndrome have normal intelligence, and others should take care not to confuse their lack of facial expression with dullness or unfriendliness. It is named for Paul Jullius Mobius, a neurologist who first described the syndrome in 1888.  [Read More]

Kara Smiles Fund

April 13, 2020 No Comments

Kara James was born with Moebius and Poland Syndrome, but at 13 Kara was fortunate to undergo the life changing surgery to show her beautiful

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Riders for Moebius

February 6, 2020 No Comments

Riders for Moebius: The health and safety of our community members and everyone associated with Riders for Moebius is our top priority. With this being

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Mission:

To educate and create awareness about Moebius Syndrome in order to enable those affected by it to live better lives.

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….
Bob Emory
Bob EmoryAdult with Moebius Syndrome
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.
Virginia Ann Villarreal
Virginia Ann VillarrealMoebius Grandmother
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!
Danielle Barron
Danielle BarronMoebius Mom
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.
Sophie Boffa
Sophie BoffaIndividual with Moebius Syndrome
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!
Rak Mehta
Rak MehtaIndividual with Moebius Syndrome!
“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.’
Katie Pennycate
Katie PennycateMoebius Mom
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.
Susana Romero De Parrella
Susana Romero De ParrellaIndividual with Moebius Syndrome
“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.”
Roger Krell
Roger KrellIndividual with Moebius Syndrome
“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.”
Jon Fisher
Jon FisherIndividual with Moebius Syndrome
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