- Who We Are
- About Moebius Syndrome
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The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, to promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research that advances the diagnosis and treatment of Moebius syndrome and its associated conditions.
The Moebius Syndrome Foundation holds virtual events, awareness events, regional events, and biennial national conferences to educate and build community among those living with Moebius and their families.
As of 2025, the Foundation has provided more than $1.5 million in funding for numerous research grants and 10 research symposiums.
Learn more about our research work and how you can get involved.
We award many educational scholarships each year to individuals with Moebius syndrome who will be attending a technical or trade school, undergraduate college, university, or post-secondary school.
For many in our community, accessing specialized medical care often requires traveling long distances. Thanks to your generous support, the Medical Travel Reimbursement Program ensures that financial barriers don’t stand in the way of essential treatment.
This donor-funded initiative provides up to $2,000 in reimbursement to families and adults living with Moebius syndrome to help offset the costs of flights, lodging, and other travel expenses for medical appointments and procedures.
The Moebius Syndrome Foundation sends welcome packets to new families and adults who join our free membership. We include an awareness t-shirt for infants and young children, a pair of children’s sunglasses, and educational materials and information about the support and resources the Foundation offers. Please note that these are limited to supplies on hand at the time of registration, and can only be mailed to parents of children with Moebius, or adults with Moebius in the United States. We strive to email everyone who joins our membership and offer virtual support and answer questions.
The Moebius Syndrome Foundation hosts biennial conferences around the United States. These diverse conferences are a unique opportunity for families, individuals with Moebius, supporters, and healthcare professionals to come together for unforgettable weekends of education, social events, and connection. We provide scholarship opportunities for first-time attendees and those with financial needs.
The Moebius Syndrome Foundation advocates for research initiatives to better understand the causes of Moebius syndrome and to discover improved treatment options for common symptoms. We also advocate for social change to foster greater understanding, respect, and equal opportunities for individuals living with Moebius syndrome and similar conditions. We spread awareness by creating free educational resources, and with the support of our members through social media and in their own communities.
The Community Empowerment Grant is an annual grant opportunity sponsored by the Moebius Syndrome Foundation. The purpose of this grant is to support people in the Moebius community who have good ideas for projects that would help to raise awareness about Moebius syndrome, or to provide support and resources for people living with Moebius syndrome and similar conditions.
With Moebius syndrome being such a rare condition, finding a healthcare provider knowledgeable with the condition and some of its unique challenges can be difficult. We would like to expand our knowledge base and list as any providers around the world as possible, but we need your help. Please complete this short form if you have a healthcare provider that you could recommend.
The Moebius Syndrome Foundation is proud to be awarded the platinum seal of transparency from GuideStar, the leader in non-profit transparency. Check out our profile.
The Moebius Syndrome Foundation was founded in the 1990s by several parents of children with Moebius syndrome. Adults with Moebius syndrome soon joined their efforts, and the organization evolved from a support group to a national nonprofit. The founders included Vicki McCarrell (pictured on right), Lori Thomas (pictured on left), Kathi Campbell, and Rich Campbell.
The first national conference took place in Los Angeles in 1994 and the 501(c)3 was granted later that year. The Scientific Advisory Board was created in 1998.