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Many Faces of Moebius Syndrome
About These Stories
Each of the personal stories in this section was created with our Story Builder. Here’s how it works: you answer a list of questions in as much detail as you’d like, and we’ll turn your responses into your very own story. If you love it and want to share, we’ll publish it here for others to read.
These stories are more than words on a page — they connect our community, spread awareness about Moebius Syndrome, and remind us that no one is alone in their journey.
If you would like to try Story Builder click here if you are an individual with Moebius syndrome wanting to have a story created for yourself. Click here if you are a parent wanting to create a story for your Moebius child.
Preston
Julian
Scotland
Alex
Alayna
Alayna
Melodie
Landon
Tony
Lilly
Keigan
Callum
Josie
Megan
Harper Wing
Dominique Estrada
Luis (Spanish)
Lucas
Thorben
Evelynn Louise
Jocelyn
Michele
Teri Goodwin
David Conrad
Luis
Daniela
Brian
Heaven
Ivy
Cassie
Tim Smith
Frequently asked Questions
1. Q. Who can take part?
A. Anyone connected to Moebius Syndrome — individuals, parents, family members, friends, or advocates — is invited to share their story through the Moebius Voices Story Board. Every perspective helps raise awareness and build understanding.
2. Q. Do I have to write the story myself?
A. Nope! You simply answer a few easy questions, and our team turns your responses into a polished story that reflects your experiences and personality. We do all the writing — you provide the heart.
3. Q. How do I submit my responses?
A. Just fill out our online Story Form. You can also email your answers directly to tim@mfoms.org if you prefer. Feel free to include a photo — it helps readers connect to your story.
4. Q. Can I answer the questions for someone else?
A. Yes! Parents, caregivers, teachers, or friends are welcome to share on behalf of someone with Moebius Syndrome, as long as you have their permission.
5. Q. What happens after I submit?
A. Our team reviews your answers, writes your story, and prepares it for posting on the Moebius Voices Story Board. You’ll receive a confirmation when it’s live on www.mfoms.org/story-board.
6. Q. Will my story appear on social media?
A. Some stories are featured on MFOMS’ social media pages to highlight voices from around the world. If you’d prefer to keep your story only on the website, just let us know — we always honor your wishes.
7. Q. Can I update my story later?
A. Yes! If you’d like to add something new or share how your journey has evolved, simply email tim@mfoms.org, and we’ll refresh your story anytime.