Dedicated to raising awareness and research funds for a rare bone disease called Fibrodysplasia Ossificans Progressiva (FOP).
"Change my Life" inspirational video for researchers & supporters
Thank you to FOP France for loaning us this beautifully done awareness video clip. (Subtitles)
What is Fibrodysplasia Ossificans Progressiva (FOP)?
FOP turns children into human statues: a healthy mind locked inside a frozen body. It is an ultra-rare orphan disease which progressively turns muscles and connective tissue to bone, permanently fusing their joints and causing immobility. The malformed big toes and presentation of mysterious swellings and/or stiffness are easily identified signs but often missed due to lack of awareness.
There are new research initiatives on the horizon for fibrodysplasia ossificans progressiva and trial preparations have begun and this research will impact other more common medical conditions that affect much larger groups of people. Researchers are also looking at what positive impact FOP research/treatments may have for people with childhood brain cancer, osteoporosis, chronic anemia, stem cell therapy, atherosclerosis, vascular calcification and heterotopic ossification experienced by wounded soldiers and a percentage of hip surgery patients.
So please help, because the hope of children and adults with FOP rests with people like you, people who care.
Clementia is rapidly developing its lead product candidate, palovarotene, as an oral therapy for fibrodysplasia ossificans progressiva (FOP) and other diseases. The drug has been shown to inhibit secondary messenger systems in the bone morphogenetic protein (BMP) pathway that promotes bone formation. Nonclinical studies demonstrated that palovarotene blocked abnormal bone formation in animal models. Please see this quick clip which explains what happens. For more information, please visit http://clementiapharma.com/our-pipeline/palovarotene/
Please come out and join us on Saturday July 16 and ride with us, run with us and walk with us to raise money to fund research to find a cure for FOP! Oxford Dodge will be there BBQing hamburgers and hot dogs for everyone. We will have face painting and tatoos for the kids and draw prizes and silent auction items for everyone to have some fun trying to win.
Thank you to everyone who came out to participate, volunteer and donated to our annual 5k Run for FOP. They had another fantastic year with $6,000.00 raised, increasing the amount for a third year! If you would like more information about this event, please contact Miranda at email@example.com.