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.
Date: Sunday November 27, 2017 RSVP: please email Canadianfopnetwork@live.com with "AGM" in the subject line. We will be in touch with further details.
Clementia Announces Top-line Results from Phase 2 Trial of Palovarotene for Treatment of Patients with Fibrodysplasia Ossificans Progressiva
MONTREAL, CANADA, October, 14, 2016 – Clementia Pharmaceuticals Inc. today announced top-line results from its Phase 2 clinical trial investigating palovarotene for the treatment of fibrodysplasia ossificans progressiva (FOP). Several positive trends were detected in this 40-subject placebo-controlled trial, including palovarotene-related reductions in the proportion of subjects who developed new HO, reductions in volume of new HO, reductions in patient-reported pain associated with flare-ups, and reductions in the time to resolution of FOP-related flare-ups though none reached statistical significance. Palovarotene was well-tolerated, with all subjects completing the 12-week trial and enrolling into the open-label extension trial. To read more.....
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 firstname.lastname@example.org.