October Newsletter for the Moebius Community

October news & updates

October 2026 | The Home for the Moebius Community ™

A Note from the President

Greetings!

For many families, the hardest part of a Moebius syndrome diagnosis is not the medical information. It is the feeling of being the only one.

That is why we are glad to open this issue with Moebius Connections. We have been connecting people since our earliest days in 1994, and our more formal peer program has been quietly making introductions within this community since 2022. Over the past year, we rebuilt it with a clearer process, more thoughtful matching, and volunteers ready to walk alongside you. It is open now to anyone looking for a friend or mentor who understands.

The pages that follow show that same commitment at work in different forms: awareness efforts that change how the world sees us, scholarships that open doors, research that moves our understanding forward, fundraisers and volunteers who give generously of their time, and donors whose support makes all of it possible.

Whatever brought you to this community, whether your own diagnosis, your child’s, or a friendship that led you here, you belong. Thank you for being part of it.

With gratitude,

Rebecca Maher

President, Moebius Syndrome Foundation

Meet Roland Bienvenu:

“Don’t judge a book by its cover.”

Roland Bienvenu Talks Human Resources and Interviewing for Jobs

After 30 years in Human Resources, Roland Bienvenu understands both sides of the interview table. He shares what helped him navigate job searches with Moebius syndrome and how applicants can help an interviewer move beyond an unfamiliar first impression and recognize what they can bring to the job.

Full article here...

FEI Fear No Face Campaign

This October, we’re supporting Face Equality International’s Fear No Face campaign to challenge stereotypes about facial differences. Halloween costumes should never turn a real person’s appearance into something frightening. Help spread the message by sharing our campaign posts throughout the month.

Learn more about Fear No Face

Community Resources

Community Empowerment Grant

There’s still time to turn your idea into something meaningful for the Moebius community!

Our Community Empowerment Grant supports projects that raise awareness of Moebius syndrome or create helpful resources and support for people living with Moebius syndrome and similar conditions.

Each year, the Moebius Syndrome Foundation awards up to $2,000 to one or more recipients.

Have an idea you’re ready to share? Learn more and apply here or click the button below.

Applications close October 30, 2026.

Apply Here

Moebius Connections

Some of the most valuable things we hear from our community come down to one sentence: it helps to talk to someone who gets it.

That idea has been at the heart of our peer connection work since 2022, and it continues to evolve with our community. Moebius Connections is now open to anyone ages 13 and older who wants a one-to-one connection with another member of the community, whether that is friendship, peer support, or mentorship around school, career, and the things that come with them.

You can sign up to be a mentor, to find one, to make a friend, or all of the above. There is no set structure to follow and no minimum commitment. The goal is simply to help people find each other.

If you have been looking for someone who understands, or you have experience that could make things easier for someone coming up behind you, we would be glad to have you.

Get started here or click the button below.

Questions? Contact us at info@moebiussyndrome.org or call 844-663-2487 ext. 700

Get Started

Conference

Call for Speakers

Share your knowledge or lived experience at our 2027 Conference in Pittsburgh! Help create meaningful conversations and learning opportunities for the Moebius community. Applications are open through October.

For the latest updates on the 2027 Conference, be sure to visit our conference website page often.

Apply to Speak

Fundraisers We Love

Moves for Moebius

We are officially past the halfway mark! Thanks to your incredible generosity, we have raised 55% of our $20,000 goal. But the Moebius community still needs us to cross the finish line. Please take a moment to give today; every dollar directly expands the vital support, resources, and connections our community relies on. Let’s finish strong, together!

Support Today

When Elegance Becomes Action

The Prom Where Smiles Aren’t Required

Burleson, TX

$5 from every paid admission benefit Project Pacmin. Remaining ticket sales benefit the Moebius Syndrome Foundation.

Questions? Email Tina Michael at NTXMoebius@gmail.com.

Upcoming Events

Grief Support Group - October 15 and November 5 and 19

The Grief Support Group meets regularly on Thursdays throughout the year, creating a safe, compassionate space for parents in the Moebius syndrome community who are navigating the loss of a child.

Email for more details

Austin/San Antonio Regional Meet-Up

- October 17

You are invited to join the Austin/San Antonio area Moebius community for a fall get-together at the Pflugerville Deutschen Pfest. Come enjoy food and drinks, live music, activities for children, vendor booths, and meet others from the area.
View event details

Just for Adults - Midlife & Beyond: October 19

Join us for a newer virtual gathering created for adults with Moebius syndrome and similar conditions who identify with being “midlife and beyond." The event begins at 5 PM PDT / 8 PM EDT / 12 AM UTC (next day - October 20).

LGBTQIA+ Chat - October 25

Join us for a welcoming Zoom chat for adults (18+) with Moebius syndrome and related conditions who identify as LGBTQIA+. Connect with others, share conversation, and enjoy a supportive space where you can be yourself.

Charla en Español - 28 de octubre

Nos encantaría que nos acompañen el miércoles 28 de octubre, a las 5:00 p.m. (PDT) / 8:00 pm. (EDT), 12:00 a.m. UTC (29 de octubre), a una charla amistosa en español por Zoom.

Regístrese aquí

KingFest in North Carolina - November 7

Come find us at the Moebius Community Information Booth during KingFest, then stay for a casual dinner together after the festival. We would love to see you there!

View event details

Pumpkins with Purpose – November 15

Join the Kentucky and Tennessee Moebius community in Madison, TN, from noon - 4 PM for pumpkin decorating and socializing! Supplies and refreshments are provided. Donations to MSF are appreciated.

View event details

Learn More and Register for All Events

Do you have news to share? Please contact us at newsletter@moebussyndrome.org.

Moebius Syndrome Foundation | moebiussyndrome.org

Meet Roland Bienvenu:

Community Empowerment Grant

Moves for Moebius﻿﻿﻿

Moves for Moebius