Many Faces of Moebius Syndrome

Many Faces of Moebius Syndrome (MFOMS), the world’s largest all-volunteer Moebius Syndrome organization, proudly announces the 15th Anniversary of Moebius Syndrome Awareness Day (MSAD) — a global campaign uniting individuals, families, and communities to raise awareness, promote inclusion, and celebrate the voices of those affected by Moebius Syndrome.

Since its founding in 2009, MFOMS has become a worldwide leader in advocacy, education, and community support for people living with Moebius Syndrome — a rare neurological condition that affects the facial and eye-movement muscles, often present from birth. Named after German neurologist Dr. Paul Julius Moebius, who first described the syndrome in 1888, Moebius Syndrome causes facial paralysis and limited eye movement, making it difficult for individuals to smile or express emotion through typical facial cues.

The first Moebius Syndrome Awareness Day was held on January 24, 2011, chosen to honor Dr. Moebius’ birthday. Since then, the day has grown into a worldwide event recognized by thousands of individuals and families across dozens of countries. Communities wear purple, share personal stories, and light up landmarks to honor the strength, courage, and resilience of people living with Moebius Syndrome.

As MFOMS approaches the 15th Anniversary of MSAD — marking 16 years of global awareness — the organization is leading an expanded campaign encouraging individuals and families everywhere to take part by:
    •     Requesting official proclamations from mayors, governors, and local leaders recognizing January 24 as Moebius Syndrome Awareness Day in their area.
    •     Sharing personal stories through the MFOMS Moebius Voices initiative, including Story Board submissions, interviews, and creative writing contributions.
    •     Wearing purple and spreading the message of inclusion and awareness throughout their communities and online.
    •     Supporting the MFOMS Awareness Storefront, featuring awareness shirts, buttons, and other merchandise that help raise visibility and fund community programs.

MFOMS has also launched the MSAD 2026 Express Proclamation Toolkit to make it easier than ever for families and advocates to request proclamations from their local officials. The toolkit includes sample letters, forms, contact lists, and easy-to-follow instructions, ensuring anyone can participate in the proclamation campaign.

In addition, the organization’s Moebius Voices programs — including Story Board, Interviews, Writers, and Friends & Family — give individuals living with Moebius Syndrome and their loved ones a platform to share experiences, inspire others, and promote understanding.

“Our mission has always been about more than awareness,” said Tim Smith, founder and president of MFOMS. “It’s about connection, acceptance, and giving every Moebius voice a place to be heard. As we prepare for the 15th Anniversary of MSAD, we’re asking everyone to join us — whether that’s by requesting a proclamation, sharing a story, or simply wearing purple on January 24.”

The campaign will continue through 2026, featuring storytelling initiatives, interviews, media outreach, and recognition events that highlight how far the Moebius community has come — and the work still ahead.

To learn more about the history of Moebius Syndrome, explore the Moebius Voices projects, or participate in the MSAD 2026 Proclamation Drive, visit www.mfoms.org.

Contact:
Tim Smith — President, Many Faces of Moebius Syndrome
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