.png)
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 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 (Virginia, USA) and Gavin Fouché (Cape Town, South Africa), in partnership with community parent Donnie Downs. When the idea was first shared online, more than 200 people joined in the first week. The inaugural MSAD in 2011 attracted widespread media attention—from Australia to the United States—and drew tens of thousands of visits to the MFOMS website within its first 24 hours.
Over time, what began as a single day of awareness has evolved into a global movement of pride, acceptance, and storytelling—a moment when people everywhere wear purple, share their experiences, and spark meaningful conversations.
Why 2026 Matters
The 15th anniversary offers a unique opportunity to reflect on progress, renew resolve, and chart a bold path forward. For 2026, MFOMS invites the Moebius community to unite under two powerful subthemes:
-
Proclamation Drive — MFOMS provides a comprehensive toolkit with both U.S. and international resources to help community members request official proclamations from local, state, national, and global leaders recognizing January 24, 2026, as MSAD.
-
Media Storytelling Initiative — A media article toolkit (including pitch templates and this official press release) will support community members in sharing their personal stories with local newspapers, radio stations, and digital outlets.
What MFOMS Will Do
-
Publish and distribute the official MFOMS MSAD 2026 press release (this document)
-
Incorporate the release into both the proclamation toolkit and media outreach toolkit
-
Roll out weekly social campaigns and newsletter support to drive engagement
-
Offer templates, guidance, and direct support to participants
-
Monitor media coverage, share success stories, and amplify voices across channels
How You Can Help
-
Wear purple on January 24, 2026, to join the wave of visibility
-
Request a proclamation from your mayor, city council, state legislature, or national government using MFOMS’ U.S. or international toolkit
-
Share your story with local media using MFOMS’ pitch templates
-
Engage online by following, sharing, and supporting MFOMS’ social media campaigns
-
Visit tinyurl.com/msadJan24 to download toolkits and join the movement
How to Participate in Moebius Syndrome Awareness Day 2026
There are many ways families and supporters can take part in Moebius Syndrome Awareness Day on January 24. You can download our proclamation toolkit, share your story through Moebius Voices, post a photo using our holiday frame, wear purple, or simply tell someone about Moebius Syndrome. Every action, big or small, helps raise understanding and support.
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:
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.
🟣15th Anniversary Moebius Syndrome Awareness Day
Media Contact Toolkit
Welcome,
Thank you for downloading the 15th Anniversary Moebius Syndrome Awareness Day Media Contact Toolkit.
This toolkit was created to support members of our community who want to share meaningful stories with local, regional, and national media. By reaching out to journalists, you help bring real voices and real experiences into public view — and help ensure that Moebius Syndrome Awareness Day (January 24) is understood beyond a single day on the calendar.
Media outreach works best when it is personal and thoughtful. Reporters are drawn to stories that feel genuine, human, and rooted in lived experience. This toolkit is designed to give you a starting point, while encouraging you to share your story in your own voice.
If you need guidance or support at any time, please feel free to reach out to me at tim@mfoms.org. I’m happy to help.
Together, we can help ensure that Moebius Syndrome Awareness Day is recognized, understood, and that the voices of our community are truly heard.
Warmly,
Timothy Smith
President, Many Faces of Moebius Syndrome
📄 Download the Media Toolkit below:
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 download it here:
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
Moebius Syndrome Awareness Day Supplies
Moebius Syndrome Awareness Day supplies are available through our online store, including shirts, buttons, name tags, and other awareness materials. To ensure items arrive in time for January 24, we recommend placing orders no later than January 7, 2026. Click here to go to our store.
Social media graphics and Facebook profile frames are also available through our Facebook page at
www.facebook.com/manyfacesofmoebiussyndrome.
If you are looking for something specific or need help finding the right materials, please feel free to reach out. We are happy to help.
Email: tim@mfoms.org
Frequently Asked Questions
💜 Together, let’s make the 15th Anniversary of MSAD the most recognized and celebrated yet!
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.
Page updated January 12, 2026