25th Anniversary of the Moebius Syndrome Foundation

Buy a Limited 25th Anniversary T-shirt

These soft and stretchy t-shirts are a great way to show your support and pride of being a part of the Moebius community. All proceeds go towards helping the Moebius Syndrome Foundation excel in their mission.

Adult sizes only: X-Small, Small, Medium, Large, X-Large, 2 X-Large

Cost: $20, includes free shipping. We only ship within the continental United States.

Buy here:


After making payment  please email jenny@moebiussyndrome.org with your t-shirt size and mailing address.



Learn more about our history from former president and founder, Vicki McCarrell:

In the Beginning. . . 25 Years of the Moebius Syndrome Foundation

It is said that ‘Coincidences are God’s way of being anonymous.’  That seemed to be the case when Lori Thomas and I found each other in 1991.  Our kids both had Moebius syndrome, and at the same time we both started searching for one other person in the world who had the rare neurological condition that left Chelsey and Sean without a smile.  It was through our letters to Forward Face in New York that we were connected and realized that we lived only 4 miles from each other in Los Angeles.   Thus it began, the get-togethers, the newsletters, Chelsey’s ground breaking smile surgery, meeting Rich and Cathy Campbell from New York at the first Moebius Syndrome Conference in Los Angeles in 1994. . .  Below are some of the highlights of this wonderful Foundation whose mission remains the same as the day it began: ‘To provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.’  Thank you for joining us on this journey. . . 

1994:  First Moebius Syndrome Conference is held in Los Angeles with 75 people from 26 states and Canada in attendance;  First newsletter is mailed to 30 families;  Rich and Cathy Campbell secure 501 c 3 status for the organization;  Vicki receives $10,000 from Maybelline for an article she wrote about Moebius syndrome for ‘Ladies Home Journal.’  All of the money goes to the new Moebius Syndrome Foundation.

1996:  Second conference is held in Tarrytown, NY; Chelsey Thomas has smile surgery with Ronald M. Zuker, MD at Kaiser Permanente Hospital in Woodland Hills, CA, and receives worldwide coverage, is featured in ‘People’ magazine as well as a host of other magazines, newspapers and TV shows.  Kaiser has to install a separate phone line to take all of the calls from people with Moebius syndrome and parents of children with Moebius syndrome who realize they are not alone.  The mailing list grows to 150.

1998: Third conference is held in Toronto, followed by conferences every other year the 3rd weekend of July; 13 conferences have been held to date with the 14th planned for July 2020 in Minneapolis.

2002: Scientific Advisory Board is formed.

2004: MSF receives a $10,000 grant from the Christopher Reeve Paralysis Foundation to produce an educational video about Moebius syndrome.

2006: Vicki meets with the heads of 3 institutes at the NIH in Bethesda, MD, to discuss how to encourage research into the genetics of Moebius syndrome.