What to Do and Where to Go: Observing Moebius Syndrome Awareness Day

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 year long!).

What is Moebius Syndrome?

Moebius syndrome is a rare, congenital condition that results from underdevelopment of the facial nerves that control some eye movements and facial expressions. The condition can also affect the nerves responsible for speech, chewing and swallowing.

The signs and symptoms vary greatly, depending on which cranial nerves are affected. If the facial nerves are involved, the patient is unable to smile, frown, pucker his/her lips, raise the eyebrows, or close the eyelids.

If the abducens nerves are affected, the eye cannot turn outward past the midline

To learn more Moebius Syndrome facts, click here.

The Moebius Syndrome Foundation 

The Moebius Syndrome Foundation is an excellent organization and resource for the Moebius Syndrome community.

Their mission is to:

“Provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.”

Organizations like them proves that rare doesn’t mean alone!

#MoebiusAwareness Project

One of the Moebius Syndrome Foundation’s efforts for Awareness Day is their #MoebiusAwareness Project — designed to use social media as a tool for mobilizing awareness.

What to do:

  1. Take a photo of yourself with a sign answering the question, “How do I express myself?
  2. Then, use the Foundation’s template, or create your own and post it on their Facebook page (click here!). You can also post on ANY of your social media pages/accounts.
  3. Challenge two of your friends to do the same by tagging them.

To read more about the project, click here!

Moebius Syndrome Awareness Day 2020 Events

Sometimes, we need to lean on the shared experiences of others to help us forge ahead.

Luckily, the Moebius Syndrome Foundation has some local events for just that. 

Look below to see if there is something within your area and region!

Houston, Texas Event- January 18, 2020

Sixth Annual Houston-area Moebius Syndrome Awareness Day event
Date:  Saturday, January 18, 2020, 1:00 pm to 5:00 pm
Location:  St. Theresa’s Catholic Church, 6622 Haskell St., Houston  77007
Refreshments will be served.
  • Attendees are encouraged to bring beverages, side dishes and/or desserts to share
  • Toys and games will be available for children
  • Professionals will be available to meet attendees and answer questions
  • Door prizes to be given out
To RSVP or ask questions, email Roland Bienvenu at [email protected] or Larry Garza at [email protected]

Arizona Event- January 25, 2020

Saturday, January 25th, 3:00 pm.

Contact [email protected] or call 925-202-4126 for more information.

New York City Event- January 25, 2020

Saturday, January 25th, 12-4 pm

1428 Madison Ave at 98th St.

Please RSVP to Dr. Bryn Webb: [email protected]

San Angelo, Texas- January 25, 2020

Moebius Fun Run / Walk – benefitting Kara Smiles Fund

For information and to register, please visit the official website.

Purple Power!

So don’t forget to wear purple, the color of Moebius Syndrome Awareness, on January 24!

How are you supporting Moebius Syndrome Awareness Day? Share your stories, thoughts, and hopes with the Patient Worthy community!

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