Who We Are - Moebius Syndrome Foundation

Our Mission

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.

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Our Work

Connecting the 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.

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Funding Research

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

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Providing 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.

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Our Financials & Reporting

Financial Overview

As a 501(c)3 non-profit, the Moebius Syndrome Foundation relies upon the support of generous donors to fulfill its mission.

2021 Moebius Syndrome Foundation Financial Review

2021 Moebius Syndrome Foundation 990 Filing

2020 Moebius Syndrome Foundation Audit Report

GuideStar

For two years in a row, the Moebius Syndrome Foundation has been awarded the platinum seal of transparency from GuideStar, the leader in non-profit transparency. Check out our profile.

Charity Navigator

The Moebius Syndrome Foundation is ranked four stars by Charity Navigator, meaning the organization “exceeds or meets best practices and industry standards across almost all areas” and is a “highly-effective charity.” See our profile.

Our History

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, Lori Thomas, 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.