Many Faces of Moebius Syndrome – awareness & advocacy

Create Your Story with Story Builder

Everyone has a story worth telling. Our Story Builder is designed to help you share yours in a meaningful way. By answering a set of guided questions, you’ll give us the details we need to create a personal story that truly reflects your journey.

We encourage you to give as much detail as possible in your answers. The more you share, the more others can learn about Moebius Syndrome, connect with your experience, and feel inspired. While shorter stories may get your name online, detailed stories help our community grow stronger and more understood.

Once your story is finished, you’ll have the option to keep it for yourself, or, if you’d like, allow us to share it on our website so others in the Moebius community—and beyond—can read, connect, and be inspired.

Take your time, answer honestly, and remember: your voice matters.

When you’re finished answering the questions, make sure to scroll to the bottom and click Submit. Your answers won’t reach us until you do.

Moebius Voices: Story Builder Q&A

First name

Last name

1. About You What’s your name, age, and where are you from? You can also share a little about your family, community, or what makes your hometown special.

2. Growing Up / Diagnosis When did you first learn you had Moebius Syndrome, and what was that experience like? Was it explained to you as a child, discovered later, or tied to a moment that stood out?

3. Challenges & Triumphs What challenges have you faced living with Moebius Syndrome, and what achievements—big or small—make you most proud?

4. Everyday Life What does a typical day in your life look like? Share about school, work, hobbies, family, friends, or community activities. What makes your day uniquely yours?

5. What Makes You Happy? What brings you the most joy? This could be activities, hobbies, favorite foods, or special people in your life.

6. What Makes Things Difficult? Are there moments or situations that are particularly tough for you? Tell us about the challenges you face — whether in communication, health, or daily life — and how you overcome them.

7. Message to Others If you could share one message with the Moebius community or the world, what would it be? This could be encouragement to others with Moebius, advice to families, or a message about inclusion and awareness for the wider world.

8. Anything Else Is there anything about your story you’d like to include that hasn’t been covered yet? Feel free to add special details, memories, or reflections that make your story uniquely yours.

Upload photo

Thank you for taking the time to share your story. Your voice makes a difference.

Continue to the Parents page.

Many Faces of Moebius Syndrome

Moebius Voices: Story Builder Q&A