In 1994, the Moebius Syndrome Foundation launched as the first national patient advocacy organization dedicated to the Moebius community and continues to support families and individuals living with Moebius. The foundation now has more than 2,000 members.
We welcome inquiries from the media. If you are a journalist, please contact firstname.lastname@example.org.
Recent Press Releases
Moebius Syndrome Foundation Welcomes New Board Members (February 15, 2018)
Moebius Syndrome Foundation Receives Global Genes RARE Patient Impact Grant (February 2, 2016)
Moebius syndrome in the news
Families gathered for moebius syndrome event (August 21, 2017) – news coverage from the MSF event in Grand Haven, Michigan this summer!
Girl, eight, with three rare conditions raises money for other sick kids (Deadline News, August 13, 2015)
Swimmer Tayla Clement has plenty to smile about, but can’t show it (stuff.co.nz, August 8, 2015)
Family of boy unable to smile thank fundraisers and local businesses for donations (Clydebank Post, June 30, 2015)
Former Virginia Tech wide receiver juggles fatherhood, first-time coaching (Roanoke Times, May 24, 2015)
Mother raises awareness of rare syndrome that leaves her toddler unable to move his face (The Daily Mail, January 27, 2014)