Vicki Mc Carrell

Vicki McCarrell



Vicki Mc Carrell is a former president and co-founder of the Moebius Syndrome Foundation, which began with small family get-togethers in her living room in the early 1990s. Vicki is the parent of a son with Moebius syndrome and has dedicated the last 25 years to bringing about worldwide awareness of the condition. She has worked with the scientific research community and MSF Scientific Advisory Board to encourage research into the cause of Moebius syndrome. Vicki enjoys speaking with and meeting parents of children and individuals with Moebius. She lives in central Missouri and holds a master’s degree in guidance and counseling from California State University – Northridge. She serves on the board of directors of the National Organization for Rare Disorders (NORD), is the former deputy director of the Missouri Division of Developmental Disabilities, and she interacts with leaders of other Moebius syndrome foundations/associations around the world.

Vicki resides in Pilot Grove, MO.


Tell us your name and position (executive committee, staff, board member)

Vicki McCarrell, current treasurer, past president and co-founder of the Moebius Syndrome Foundation

What does the MSF mean to you, personally? 

The MSF is extremely important to me. From day 1, I’ve wanted to connect with other Moebius mothers to help them through the journey of having a child with Moebius syndrome. I’ve loved getting to know people worldwide, including individuals with Moebius syndrome, parents and researchers, and physicians/therapists. I love the little faces of babies and children with Moebius and want to give their parents hope for their children. 

What might the MSF community be interested to learn about you? 

I have a master’s degree in Counseling, was the president of a private 4 year fashion/interior design college in Los Angeles for 10 years, was the executive director of an agency that serves individuals with disabilities in central Missouri for 13 years and served as the Deputy Director of the Division of Developmental Disabilities for the state of Missouri for 5 years before retiring. I served on many boards and councils at the state and federal level and was on the board of directors of NORD for 9 years. 

What do you want the Moebius syndrome community to know about the BOD and what we do? 

The MSF board is made up of individuals with Moebius syndrome, parents, and a physician. Our mission is to provide education and information to the public about Moebius syndrome, provide college scholarships for young adults with Moebius syndrome, host conferences every 2 years, as well as scientific symposiums, and provide funding for research.

Can community members reach out to you if they have any questions or comments about the Foundation/ideas they may have? 

Absolutely, parents and people with Moebius syndrome are welcome to reach out to me!

Contact Info

Phone : (844) MOEBIUS (663-2487) ext. 701
Email :