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 of haven’t heard of this illness.nerve

Moebius syndrome is a rare neurological disorder that is characterized by weakness or paralysis of multiple cranial nerves, most often, the abducens and facial nerves, which are the 6^th and 7^th nerves, respectively. The disorder may also cause skeletal involvement.

Moebius syndrome is a congenital disorder – and if the facial nerves are involved, the patient is unable to smile, frown, pucker his/her lips, raise eyebrows, or close eyelids. This is often described as a “mask-like” face.

In addition, other signs and symptoms of Moebius syndrome include underdevelopment of the pectoral muscles and defects of the limbs, drooling excessively from a short, malformed tongue, cleft palate, and delays in certain developmental milestones, such as crawling and walking.

So what can you do to raise some awareness?

1. Participants are encouraged to wear purple as a sign of solidarity and awareness

2. Use the hashtag #MoebiusAwareness on your social media accounts

3. Take a photo of yourself with a sign answering the question, “how you express yourself?” using the Moebius Syndrome Foundation’s template, and post it on their Facebook page. Then, challenge two of your friends to do the same by tagging them.

Check out the foundation’s website here to learn more about Moebius Syndrome and more ways you can help make a difference – on awareness day and every other day of the year!

Every new person who learns about a rare disease is just one more opportunity for a more hopeful tomorrow in advocacy and treatment. Let’s get to work!

Do you have a rare disease? Share your stories, thoughts, and hopes with the Patient Worthy community!