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Many Faces of Moebius Syndrome
Moebius Syndrome Awareness Day 2026
About Moebius Syndrome Awareness Day
As we reflect on fifteen years of progress, Moebius Syndrome Awareness Day continues to grow through the everyday actions of individuals and families around the world. Whether by sharing a personal story, speaking with local media, participating online, supporting awareness efforts, or simply starting conversations within their own communities, each contribution helps broaden understanding and visibility.
There is no single way to take part. Every voice, every story, and every effort — no matter how small — helps move awareness forward and strengthens the sense of connection within the Moebius community.
Moebius Syndrome Awareness Day on Facebook
Throughout Moebius Syndrome Awareness Day, we’ll be sharing updates, moments, and community events as they happen on our Many Faces of Moebius Syndrome Facebook page.
From local activities and school events to family moments and awareness efforts around the world, this is where we’ll be posting highlights and updates throughout the day.
👉 Follow along here:
https://www.facebook.com/Manyfacesofmoebiussyndrome
We invite you to check in, share posts, and celebrate the day with us as we lift up our community together. 💜
Moebius Syndrome Awareness Day 2026
Press Release
FOR IMMEDIATE RELEASE
Many Faces of Moebius Syndrome, the world’s largest all-volunteer Moebius Syndrome organization, announces the 15th Anniversary of Moebius Syndrome Awareness Day
Global Campaign Kicks Off for January 24, 2026 — Wear Purple, Tell Your Story, Request Proclamations
Contact: Tim Smith — tim@mfoms.org | www.mfoms.org
Remington, Virginia — September 26, 2025 — Many Faces of Moebius Syndrome (MFOMS) is proud to announce the 15th anniversary of Moebius Syndrome Awareness Day (MSAD), set for January 24, 2026. Since its inception in 2011, MSAD has united individuals, families, and communities across the world to raise awareness, reduce stigma, and celebrate the voices of people with Moebius syndrome.
A Legacy of Awareness
MSAD was founded by MFOMS co-leaders Tim Smith and Gavin Fouché, in partnership with community parent Donnie Downs. The inaugural MSAD in 2011 attracted widespread media attention—from Australia to the United States—and sparked tens of thousands of visits to the MFOMS website within its first 24 hours. Over time, what began as a day of awareness has evolved into a global movement of pride and storytelling.
Why 2026 Matters
The 15th anniversary offers a unique opportunity to look back on progress, renew resolve, and chart a bold path forward. For 2026, we invite the Moebius community to unite under two powerful subthemes:
1. Proclamation Milestone: In 2025, MFOMS received the first-ever statewide proclamation from the Commonwealth of Kentucky recognizing Moebius Syndrome Awareness Day, marking a historic milestone in the observance’s growth.
2. Media Storytelling Focus: MFOMS is amplifying personal stories and awareness messaging through social media and digital platforms in the days leading up to January 24.
What MFOMS Will Do
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Publish and distribute the official MFOMS MSAD 2026 press release (this document)
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Share coordinated social media messaging leading up to January 24
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Highlight community stories and amplify awareness across MFOMS platforms
How You Can Help
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Wear purple on January 24, 2026, to join the wave of visibility
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Share your story with local media using MFOMS’ pitch templates
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Engage online by following, sharing, and supporting MFOMS’ social media campaigns
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Visit our Moebius Syndrome Awareness Day page to download toolkits and join the movement
Acknowledgment & Collaboration
MFOMS values and honors the efforts of the Moebius Syndrome Foundation (MSF) www.moebiussyndrome.org and other global Moebius organizations in raising awareness, supporting research, and helping families. We welcome collaborative amplification of messages and events—while recognizing that MFOMS remains the originator and steward of MSAD’s 15-year legacy.
About MFOMS
Many Faces of Moebius Syndrome (MFOMS) is an all-volunteer global community platform dedicated to elevating the voices, stories, and connections of people living with Moebius syndrome. Through advocacy, awareness campaigns, storytelling initiatives, and community support, MFOMS engages individuals and families across the world. As the founding organization of Moebius Syndrome Awareness Day, MFOMS continues to steward the legacy, amplify grassroots voices, and empower local action.
Historic 2026 Kentucky Statewide Proclamation
In 2026, Kentucky became the first state to issue a statewide proclamation recognizing Moebius Syndrome Awareness Day. This marked an important milestone in the continued growth of awareness and understanding for individuals living with Moebius syndrome.
This moment was made possible when Megan Brown reached out and asked that a request be submitted on her behalf. That single email helped lead to a statewide recognition — a reminder that meaningful progress often begins with one person choosing to speak up.
Megan’s experience is part of a larger collection of personal stories that continue to shape how awareness grows. You can read her story here:
State of Maine Issues Letter Recognizing
Moebius Syndrome Awareness Day
On January 14, 2026, the Office of the Governor of Maine issued a formal letter recognizing Moebius Syndrome Awareness Day, observed on January 24.
Signed by Janet T. Mills, the letter acknowledges Moebius syndrome as a rare neurological condition and highlights the importance of awareness, compassion, and inclusion for individuals and families affected by it.
In her message, Governor Mills notes the challenges associated with Moebius syndrome and thanks those who work to support and uplift individuals living with the condition. The letter emphasizes that increased awareness helps foster understanding and recognizes the meaningful contributions made by people within the Moebius community.
We are grateful to the State of Maine for taking the time to formally recognize Moebius Syndrome Awareness Day and for adding its voice to the growing chorus of leaders who understand the value of visibility, education, and respect.
You can read the full letter below.
Moebius Syndrome Awareness Day 2026 in the News
Over the years, Moebius Syndrome Awareness Day has been covered by local and regional news outlets through opinion pieces, guest columns, and community reporting. These articles help share real perspectives and broaden public understanding beyond clinical descriptions.
What Happens When the World Can’t Read Your Face
Guest column by Tim Smith — FauquierNow (2026)
Read the article here.
What people get wrong when they judge emotion by a face
Written by Tim Smith - Reddit.com
Celebrating 15 Years of Moebius Syndrome Awareness Day
Written by Tim Smith - Medium Daily Digest (Dec 2, 2025)
Why Facial Expression Doesn’t Tell the Whole Story
Written by Tim Smith - Substack
Why Anniversaries Matter: 15 Years of Moebius Syndrome Awareness Day
Written by Tim Smith - Medium Daily Digest (January 18, 2026)
Warrington Hunt turns purple spotlight on Moebius syndrome
Local and regional news coverage has helped bring Moebius Syndrome Awareness Day into the public conversation through the story of the Roberts family and their son Jackson, highlighted by community support and awareness efforts.
The Roberts Family on CBS NEWS Philadelphia
A big shout-out to Patricia Roberts, her husband, and their son Jackson for representing the Moebius community on Philadelphia TV and helping spread awareness.
We were especially proud to see our Moebius Syndrome Awareness Day profile frame featured during the segment — a powerful reminder that visibility matters.
Thank you for sharing your story and standing up for families everywhere. 💜
State of Maine recognizes Moebius Syndrome Awareness Day
The State of Maine has joined the State of Kentucky and formally recognized Moebius Syndrome Awareness Day, and that recognition has now entered the public record.
Download the letter of recognition here
Saint Regis Mohawk Tribe has publicly recognized Moebius Syndrome Awareness Day
We extend our sincere thanks to the Tribal Council for raising awareness, promoting understanding, and recognizing the strength and individuality of individuals and families impacted by Moebius syndrome.
We would also like to personally thank Tee Laughing-Bigtree for reaching out to us last night and for sharing this wonderful news earlier today. Moments like this happen because of people who care and take the time to make connections.
This recognition reflects compassion, respect, and a commitment to inclusion — values that sit at the heart of this community-led day. Thank you for standing with the Moebius community.
Moebius Syndrome Awareness Day
Facebook Profile Frames
Every face has a story.
Every story deserves to be seen.
Over the past couple of weeks, we’ve been creating personalized Moebius Syndrome Awareness Day profile frames for members of our community — each one made to fit the individual.
If you’d like a personalized MSAD profile frame, email your photo to tim@mfoms.org. No forms. No deadlines. Just people helping people. To view our Faces of Moebius Syndrome gallery on Facebook click here.
Moebius Syndrome Awareness Day
A Volunteer Led Journey to Global Recognition
This book documents the origins of Moebius Syndrome Awareness Day — how a simple idea grew into a globally recognized day through persistence, shared experiences, and community support. It provides context for why January 24 matters and how awareness has been shaped over time.
Written for readers who may not be familiar with Moebius syndrome, the book offers an accessible introduction to the journey behind Moebius Syndrome Awareness Day and the people who helped carry it forward.
The book is currently available on Amazon.
Readers in the United States can purchase or download it here:
From January 16, 2026, through January 22, 2026, the eBook is available for .99 cents.
Readers outside the U.S. can find it by searching the full title on Amazon:
Moebius Syndrome Awareness Day: A Volunteer-Led Journey Toward Global Recognition
Voices from the Moebius Community
An Anthology
Volume 1
Voices from the Moebius Community: An Anthology is a collection of personal stories written by individuals with Moebius syndrome and by parents, partners, and family members who walk alongside them.
Moebius syndrome is a rare neurological condition that affects facial movement and expression. But what it changes most often is how people are perceived—and how they are treated—by a world that relies heavily on the face to understand emotion.
The stories in this book are shared in the authors’ own words. They are not edited to fit a single narrative or message. Some are reflective, others direct. Some are written from hospital rooms, classrooms, workplaces, or quiet moments later in life. Together, they show the many ways people grow, adapt, love, and find meaning when expression does not tell the whole story.
The book is currently available on Amazon. Readers in the United States can download it here.
Readers outside the U.S. can find it by searching the full title on Amazon: Voices from the Moebius Community An Anthology Volume 1
Frequently Asked Questions
Q: What is Moebius Syndrome Awareness Day?
A: Moebius Syndrome Awareness Day is a global event held each year on January 24 to raise awareness of Moebius Syndrome, a rare neurological condition that causes facial paralysis and limited eye movement.
Q: Why is 2026 an important year?
A: 2026 marks the 15th anniversary of Moebius Syndrome Awareness Day — celebrating 15 years of advocacy, storytelling, and awareness across the world.
Q: How can I get involved in MSAD 2026?
A: There are many different ways to take part in Moebius Syndrome Awareness Day, and every effort — large or small — helps make a difference. Some community members choose to share stories with local media, others help by wearing or sharing awareness materials, and some support the day simply by spreading the word online.
💜 Together, let’s make the 15th Anniversary of MSAD the most recognized and celebrated yet!
Page updated January 23, 2026