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 and support those living with Moebius syndrome, raise awareness of this condition and patient needs, garner funds for research, and combat stigma, discrimination, and stereotypes directed at those with facial differences.
January 24th is the chosen awareness day as it is the birthday of Professor Paul Julius Moebius, the first person to describe this condition in medical literature.
This year, a variety of global partners and advocacy organizations – from the Many Faces of Moebius Syndrome to Face Equality International to the Children’s Craniofacial Association – are coming together to amplify awareness opportunities.
Ways to Raise Awareness
Are you interested in helping to raise Moebius syndrome awareness? Here are some of the steps that you can take both on and outside of MSAD 2023:
- Hold conversations. One of the most important ways that you can make a difference is by combating stigma and holding conversations about facial differences. Advocacy begins at home. So start speaking with others about how you can champion and support inclusion of all people, regardless of visible differences.
- Get on social media. Use hashtags such as #MoebiusSyndromeAwareness and #MSAD2023 to share your own story or those of others. Uplifting those who live with Moebius syndrome and allowing them to share their stories is crucial to raising awareness and understanding on a greater scale.
- Participate in an event. You can check out this list of events from the Moebius Syndrome Foundation to get involved in.
- Donate. You can also donate to the Many Faces of Moebius Syndrome or other patient organizations that help support patients, develop educational materials, collect resources, and spur research.
What is Moebius Syndrome?
Moebius syndrome is a rare congenital neurological disorder characterized by the weakness or paralysis of multiple cranial nerves. While the 3rd, 4th, 5th, 9th, 10th, and 12th nerves may be affected, causing skeletal involvement, Moebius syndrome most often impacts the 6th and 7th nerves (abducens and facial nerves). Doctors are unsure of the exact cause of Moebius syndrome. Some hypothesize that the disorder has genetic underpinnings, while others believe it could result from interrupted blood flow during fetal development.
Symptoms and characteristics vary based on the affected nerves. Potential characteristics and signs can (but do not always) include:
- Inability to smile, frown, pucker the lips, close the eyelids, or raise the eyebrows
- Eyes that cannot turn outward
- Underdeveloped pectoral muscles and limbs
- Developmental delays
- Weak upper body strength
- Excessive drooling
- A cleft palate and/or short, malformed tongue
- Autism spectrum disorder
- Feeding, swallowing, and choking problems
- Respiratory difficulties
- Visual impairments
- Sleep disorders
- Sensory integration dysfunction
Corrective procedures for Moebius syndrome include cross-facial nerve grafts, transferring muscles from the thigh to the face, and temporalis tendon transfers. Those with this condition may also benefit from prostheses, splints, braces, occupational therapy, physical therapy, or speech therapy.
