There are many individuals living well with FD, MAS and Cherubism. Thriving online patient communities are a testament to the strength and joy of patients living with FD, MAS and Cherubism.
This page features some public interest talks and articles written by or about patients in our community. Read other empowering stories on #FDWarrior Skye Miu Steppe’s website, fibrousdysplasiawarriors.org.
Patients in the News
Dylan Levine of Paramus, N.J., has polystotic FD and is a world class wheel chair tennis and basket ball player. In 2008, he was interviewed before competing for the U.S. junior team at the 2008 Invacare World Team Cup. Aug 4, 2009 he was featured on FOX News. Read “Getting to Know Dylan Levine”
Lauren Ruotolo is an inspirational speaker, and the author of Unstoppable in Stilettos: A Girl’s Guide to Living Tall in a Small World. Watch her speak about being Unstoppable with FD/MAS at our 2014 Patient and Family Conference.
Amanda Bory has MAS and polystotic FD, and was a pretty regular teen except that she did a phenomenal amount of volunteer work. Access Illness Spurs Life of Achieving. Read “Illness Spurs Life of Achieving”
Teenaged William Moore wins Middle Georgia’s Extraordinary Teen Award for his outstanding academic, athletic, creative and civic achievements. Read “The Achiever – William Moore”
Lucy Gilmore has MAS and polystotic FD and pursued competitive swimming through her college years. Read “Swimming Against the Odds”
Vicky Wright (nee Lucas) has extensive Cherubism in her mandible and maxilla and made a decision not to pursue a surgical treatment. She has been a subject of BBC documentaries and has written eloquently about negotiating a world which has a narrow notion of normal. Read “Why I want you to look me in the face” and “Cherubism and Me”
FD Foundation Members who have stories to add to this page should contact us.
Other Patient Speakers at Our Conferences on the Topic of Wellbeing