Liam is a wonderful 8 year old boy who loves being athletic and loved racing BMX dirt bikes. But when his mom was listening to her Genetics class’ projects she noticed that one of the projects had a striking resemblance to symptoms that her son had. This genetic disorder was FOP. FOP is short for Fibrodysplasia Ossificans Progressiva, A.K.A. Stonemans Syndrome. One of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. One Day Liam’s Mother will have to watch her son make the decision whether or not to be trapped in a sitting upright or a laying down position. FOP Effects 1 in 2 million people, it is so rare that there are only 285 cases known in the U.S. 4 of which are located in Colorado.
Lakewood High School and The One World One Roar Foundation are dedicating a whole week to Liam and FOP Research/awareness. As requested by the family, 20% of proceeds will be given to the family and 80 % will be donated to the researchers at the University of Pennsylvania School of Medicine, the only laboratory in the US dedicated to FOP research.
Please donate by selecting the “donate via lhs” tab.