January 24, 2024 is recognized as Moebius Syndrome Awareness Day, a day to spread awareness about the rare disease Moebius syndrome among the medical field and the general public.
The 24th is the birth date of Professor Paul Julius Moebius. The professor initially described the disorder in 1888.
Moebius Awareness Day has now become an annual event celebrated throughout the world on January 24th. This year the theme is “This is MoebiUS” with particular attention given to the challenges, unique stories, and especially triumphs associated with Moebius syndrome.
The condition is rare at just two to twenty per million births. However, one triumph came about in 2010 with the idea of starting a global Moebius Syndrome Awareness Day. Within one year, 6,000 people joined the cause and the Moebius Syndrome Awareness Day was born.
About Moebius Syndrome
Moebius syndrome is a rare neurological condition causing facial paralysis affecting speech, respiratory difficulties, feeding, and limbs. It is usually present from birth (congenital) and is non-progressive.
January 24 Events
The events planned for the day will be both in-person and worldwide virtual events where people with Moebius can share experiences, raise awareness, create better understanding, and join the community.
The term ‘awareness’ is key to creating a respectful and equitable world for people with Moebius.
Moebius Foundation Executive Director Jenny Whitman encourages people to join members of the Foundation by wearing purple, ask questions, sharing experiences, and most of all, joining the celebration on January 24th.
Individuals with the syndrome, their families, and supporters are also invited to share messages on email platforms and social media.
A Board of Scientific Advisors supports the Foundation through its research to identify the etiology of the disease as well as developing effective treatments.
Their efforts include hosting symposiums and national conferences, scientific research, sponsoring regional gatherings including support groups, and providing educational materials and resources.
Please visit www.moebiussyndrome.org if you would like additional information about the January 24th Awareness Day, ways in which you can participate, and/or how to otherwise support the cause.
Executive Director Jenny Whitman may be contacted at 1-844-663-2487 ext. 703 or [email protected] for media- related questions or a discussion of the mission and work of the Foundation.
