Happy Moebius Syndrome Awareness Day!
As readers of our blog will know, today is Moebius Awareness Day. Our previous blogs have sought to explain more about the condition and how you can raise awareness. Today, however, we will focus on the history of Moebius Syndrome and on efforts to educate the public about its impact.
Moebius Syndrome Awareness Day is held annually on January 24th in recognition for the birthdate of Professor Paul Julius Moebius. Dr. Moebius, born in Leipzig in 1853, worked as a physician and medical professor in Germany throughout the course of his life. In 1888, he became the first person to recognize the syndrome that would bear his name.
While the syndrome bears his name, Dr. Moebius was not the first or only doctor of his time to study it. In fact, in 1880 Dr. Albrecht von Graefe began describing cases of facial paralysis, which Dr. Moebius further discussed in publications in 1888 and 1892.
For years, Moebius Syndrome remained almost completely unknown. Dr. Moebius, while influential in his time, remained far from a household name, and those living with Moebius Syndrome were widely misunderstood.
In recent times, however, the condition has become better understood and received more attention. For example, a pair of concerned parents in Los Angeles, California started the Moebius Syndrome Foundation in 1994 after struggling to find appropriate resources for their children who had developed the condition.
Now, this organization plays a crucial role in spreading awareness and allowing people within the community to connect with each other and learn more about how to handle the syndrome. For example, every two years, the Moebius Syndrome Foundation hosts a conference that brings together educators, physicians, and those who live with Moebius Syndrome in order to better learn from each other’s experiences.
The Moebius Syndrome Foundation also works to promote Moebius Syndrome Awareness Day alongside the group Many Faces of Moebius Syndrome which established the day in 2011.
One of the most important parts of the recent effort to better understand Moebius Syndrome is conducting research to expand knowledge into how it impacts those who live with it. For this, we owe a great deal of gratitude to the work of Dr. Kathleen Bogart and the Disability and Social Interaction Lab at Oregon State University.
Dr. Bogart, who lives with Moebius Syndrome, directs the lab and attempts to better understand the social implications of life with facial paralysis and other conditions like Parkinson’s disease. Her work has shown that education about these conditions is important to creating a positive social perspective on them.