For nearly two decades, I’ve been building and maintaining a global online community for individuals and families affected by Moebius syndrome, a rare neurological condition that most people have never…
January 24, 2024 is recognized as Moebius Syndrome Awareness Day, a day to spread awareness about the rare disease Moebius syndrome among the medical field and the general public. The…
In the past, Katie Lockwood has worked in a variety of different roles within counseling and education; she even worked as a disability advocate, championing inclusion on a larger…
This year, the 13th annual Moebius Syndrome Awareness Day (MSAD) will take place on Tuesday, January 24. Moebius Syndrome Awareness Day, as the name suggests, is an event to celebrate…
Growing up, Tayla Clement never saw anybody that looked like her in the media she engaged with. You see, Tayla has Moebius syndrome, a rare congenital neurological disorder characterized by…
Rare Disease Week 2022 Rare Disease Week is the week that leads up to Rare Disease Day, which is recognized on the last day of February. This year, we are…
Tim Smith is the President of Many Faces of Moebius Syndrome (MFOMS), a nonprofit spreading awareness of the rare condition Moebius syndrome. This condition is characterized by the underdevelopment of…
Moebius Syndrome Awareness Day is January 24th! This event was created in 2011 by the Many Faces of Moebius Syndrome (MFOMS). It is now celebrated across the world, as the…
In our 21st century world, we have become enveloped by technology. In the age of COVID-19, we are even more reliant. In an instant, so many of our every day…
Moebius Syndrome Moebius syndrome is a rare condition that causes an inability to move the eyes laterally and facial paralysis. A similar type of paralysis can also occur as a…
January 24th is Moebius Syndrome Awareness Day! Let's take a deeper dive into what Moebius Syndrome is and what we can do to push awareness on this day (and all…
July is national Cleft And Craniofacial awareness and prevention Month! While one of the fruits of summers is time off from school, shortened summer hours, or sunny vacations - it's…
Alex Barker never planned on marrying someone with his same rare diagnosis, but he has to admit, the shared experience has made him and his wife closer. Alex has Moebius…
The 13th Moebius Syndrome Foundation Conference This event will be an opportunity for patients and families to learn the latest info from Moebius syndrome experts. Families will learn about a…
Tomorrow is Moebius Syndrome Awareness Day! Moebius Syndrome Awareness is celebrated globally each year - with the goal of raising awareness about this rare condition and to educate the many…
Erin Smith and Alex Barker's story is the stuff that dreams are made of. The couple both suffer from moebius syndrome, a rare neurological disorder that causes weakness and paralysis…
A UK family was almost certain they'd lose their baby, but it was her giggle that filled them with hope. When she turned 2 years old, Poppy Smith underwent a…
Ceridwen Hughes is known for capturing visceral moments of reality in striking photography series. This time, she has navigated into the devastating world of rare disease and she's using her…
A new book was just released called “Nasty Women: Feminism, Resistance, and Revolution in Trump’s America,” a collection of essay's written by empowered women speaking out against life in Trumpland.…
Lily Ayres, at the ripe age of 2, has been fighting a rare disease ever since she was born. Little Lily suffers from Moebius syndrome and because of it, she…
David Church is a 21-year-old Professional Billiards player and he has the will power of a Saint. He suffers from Moebius syndrome, an extremely rare neurological disorder that causes severe…
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