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 community comes together to raise awareness of this rare condition.
The date was picked because it is the birthday of the doctor this condition was named after- Paul Julius Moebius. He first documented the disease back in 1888.
Moebius syndrome is a rare neurological disease which most prominently impacts the cranial nerves which control the facial muscles. Most patients are born without the 6th and the 7th cranial nerves. This leads to facial paralysis.
Moebius Syndrome Awareness Day 2022
This year’s awareness day has been officially announced by the united organizations MFOMS, the Children’s Craniofacial Association, the Moebius Syndrome Foundation, and Face Equality International.
They emphasize one of the primary aims of this day: to recognize and celebrate how unified this community is. Although the condition itself is rare, the similarities each individual patient experiences bring everyone together. Knowing that you’re not the only one living with this condition and that others have shared the same experiences as you can be life-changing.
Around the globe, patients and their families will celebrate in real-time together. Unfortunately, due to the spread of COVID-19, many of the larger events for Awareness Day have been suspended. That said, there are some gatherings planned in Michigan, New York, Alabama, Georgia, California, Pennsylvania, Kansas, Arkansas, Georgia, Australia, England, and Canada. Photos and videos from those events will be shared here.
To get involved and help spread awareness, check out the 2022 MSAD Toolkit or some of the posts shared on Twitter, Instagram, and Facebook. Also, wear purple! Purple is the color of wisdom and of power.
Moebius syndrome patients are more than patients. They are more than their diagnosis. They are parents, children, family members, employees, public servants, educators, bosses, and more. This awareness day not only spreads awareness of this condition, but it shares the humanity behind it.
