DENVER, CO-The Moebius Syndrome Foundation (MSF) proudly announces the observance of Moebius Syndrome Awareness Day on January 24, 2025. This year, we embrace the theme “Celebrating 30 Years of Community” to highlight the 30-year journey of the Moebius Syndrome Foundation as we support individuals and families living with Moebius syndrome.
Moebius syndrome is a rare neurological condition affecting around 2-20 births per million births. It causes facial paralysis or weakness and can cause speech, feeding and respiratory difficulties, limb differences, and other symptoms. It is a congenital, non-progressive disorder that affects individuals from all walks of life. Our theme, “Celebrating 30 Years of Community,” highlights the MSF’s three decades of advocacy, education, community support, connections, and research initiatives benefitting those living with this rare condition.
The day’s events will include worldwide virtual and in-person gatherings and social media messages where individuals with Moebius syndrome and their families can share their experiences. These activities aim to raise awareness, promote understanding, and foster a sense of community among those impacted by Moebius syndrome.
The first official Moebius Syndrome Awareness Day was held in 2011 and spearheaded by Many Faces of Moebius Syndrome. “Congratulations to the Moebius Syndrome Foundation on reaching their 30-year milestone. Moebius Syndrome Awareness Day and the global community building the Many Faces of Moebius Syndrome has done along the way would not have been possible if the Moebius Syndrome Foundation hadn’t been first on the scene. When I was growing up no one knew what Moebius syndrome was. Parents were alone. Now we all have hope thanks to the Moebius Syndrome Foundation and the many labors of love they have performed over the past 30-years. Happy Anniversary MSF.”
– Tim Smith, founder Many Faces of Moebius Syndrome
“We are excited to join with many other groups and organizations celebrating on January 24. We all have a goal to help spread worldwide awareness and create more understanding while highlighting the celebration among those living with Moebius syndrome. For the last thirty years, the Moebius Syndrome Foundation has created new opportunities and spread more awareness about this rare condition, improving the lives of many. We are so grateful for the incredible support from those who believe in our mission. We invite everyone to join us in wearing purple, share their journeys, ask questions, and celebrate with us this month,” stated Jenny Whitman, Executive Director of the Moebius Syndrome Foundation.
For more information about Moebius Syndrome Awareness Day, how to participate, and ways to support our cause, please visit www.moebiussyndrome.org.
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Please contact Jenny Whitman, Executive Director, at +1-844-663-2487 ext. 703 or jenny@moebiussyndrome.org for media-related questions, or to discuss the work and mission of the Moebius Syndrome Foundation.
