Press Room

Moebius Syndrome Foundation

In 1994, the Moebius Syndrome Foundation launched as the first national patient advocacy organization dedicated to the Moebius community. Now with more than 4,600 members, the Moebius Syndrome Foundation continues to support families and individuals living with Moebius syndrome.

We welcome inquiries from the media. If you are a journalist, please contact: info@moebiussyndrome.org. We can also assist in connecting journalists with individuals with Moebius syndrome, and their families, who are open to talking with the press.

Moebius Syndrome Foundation

Our Work

Connecting the Moebius Syndrome Community

The Moebius Syndrome Foundation holds virtual events, awareness events, and bi-annual conferences to educate and build community among those living with Moebius and their families.

Funding Research

As of 2021, the Foundation has provided $1.4 million in funding for numerous research grants and 6 research symposiums.

Educational Scholarships

The Moebius Syndrome Foundation awards several educational scholarships each year to individuals who have Moebius syndrome and who will be attending an undergraduate college, university, or post-secondary vocational school.

The Moebius Syndrome Foundation is a 501(c)3 organization and is headquartered in Denver, CO.

Press Releases

New Executive Director Announced

2022 Moebius Syndrome Foundation Conference

Scroll down to our blog for recent news relevant to the foundation.

Moebius Syndrome In The News

Recent articles featuring Moebius syndrome

Rare Revolution Magazine – Ophthalmology Edition, Summer 2023

The Hero in Everyone, featuring David Garcia

More Than A Smile, featuring Dr. Greg Borschel, chief of plastic surgery, Riley Children’s Hospital

2023 Articles

USF Student Shines Light on Rare Facial Disorder: Moebius Syndrome, featuring Jessica Maher, May 30, 2023

The Safe Place Where Young People Can Feel Accepted For Who They Are, featuring Carly Newsholme, June 30, 2023

Quick Links

Mission, history, and our work

What is Moebius syndrome?

Moebius Syndrome Awareness Day

Moebius syndrome research advances

Leadership team and biographies

Awards & Honors

The Moebius Syndrome Foundation has been awarded the platinum seal of transparency from GuideStar, the leader in non-profit transparency. Check out our profile here.

The Home For The Moebius Community

Moebius Syndrome Foundation News

Nov

Request for Applications!

REQUEST FOR APPLICATIONS: Grant Proposal to Study Moebius Syndrome for New Investigators The Moebius Syndrome Foundation Grant Program is pleased to provide seed-money grants to qualified investigators for scientific and/or clinical research on Moebius syndrome. This year, the Moebius Syndrome Foundation is actively seeking applications from new investigators who are passionate about advancing the understanding...

Nov

Check out our Fall 2023 Newsletter!

Read and download the Fall 2023 Newsletter here!

Back to School With Moe, the official MSF mascot - a Dalmatian with purple spots

Aug

Get A Back to School Kit Featuring Moe!

Moe is headed back to school with kids in the Moebius community! As the new mascot for the Moebius Syndrome Foundation, Moe creates a connection with children as they learn about Moebius syndrome. Moe explains that a child in a kid’s class may have Moebius syndrome, and they might look or sound different than others....

A Guide for Healthcare Providers now available

Jul

NEW! A Guide for Healthcare Providers

We are excited to announce the arrival of our new resource, A Guide for Healthcare Providers. This booklet is designed to help healthcare providers get a brief overview of Moebius syndrome and guidance on the types of specialist care a patient may require. The guide includes sections on eyes, speech and feeding, smile and blink...

Jul

Making A Difference For Moebius Campaign Launches

This month, the Moebius Syndrome Foundation is highlighting the many ways we offer support and resources to the Moebius community. We are asking for your help to make it possible for us to continue our important work. Here is some of the important work we’ve accomplished because of supporters like you… Invested over $1.4 million...

New MSF Funded Genetics Research Findings

Jun

MSF Funds Research Study Published in Nature Genetics

The Moebius Syndrome Foundation is thrilled to announce that research funded by the Foundation has been published in the prestigious Nature Genetics research journal. The genetics researchers from Boston Children’s Hospital, the National Institutes of Health, and the Icahn School of Medicine at Mount Sinai partnered with the Moebius Syndrome Foundation with the aim to...

Images of the old website and the new website with the text "We have a new look!"

Jun

New Moebius Syndrome Foundation Website

You’re in the right place! The Moebius Syndrome Foundation has launched a new website. We greatly thank our volunteers for the time and effort it took to design, build, and create the website. More than 250 volunteer hours were spent on the creation of the new website. The Moebius Syndrome Foundation would like to thank...

Jun

Medical Travel Reimbursement Now Available

The Moebius Syndrome Foundation is pleased to announce a new Medical Travel Reimbursement Program to assist U.S. families and individuals with Moebius syndrome. Traveling to medical appointments or procedures can be costly, and this program allows the reimbursement of up to $2,000 to help offset the financial burden. Thanks to our supporters, members who reside...

Jun

MSF Funds New Research Into Disclosing Facial Differences

The Moebius Syndrome Foundation funded research into when and how someone should disclose a facial difference. The research, led by Dr. Kathleen Bogart, revealed that most individuals with facial differences opted to disclose their condition to others. More than half of participants disclosed their facial difference on the job. Personal disclosure resulted in more positive...