Dedicated to raising awareness and research funds for a rare bone disease called Fibrodysplasia Ossificans Progressiva (FOP).
Videos from our Global FOP Community
In these rarest of children mother nature has hidden secrets that, if uncovered, would impact all other diseases that affect the masses -
Dr Fred Kaplan
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.
2017 in Review
Thank you everyone for all your hard work supporting our shared mission of finding a cure for FOP. This was a big year and we are excited to share that we were able to fund $27,000 for FOP research at the U of Alberta, we hosted a Canadian FOP Conference, bringing Canadian patients and FOP specialists together, and have just made a $70,000 USD donation to U of Penn via the Ian Cali Endowment Fund for FOP research
VERY EXCITING CLINICAL TRIAL NEWS!! Clementia Pharmaceuticals is currently RECRUITING patients with FOP in CANADA for Phase 3 MOVE project. Please visit the following website for inclusion criteria https://clinicaltrials.gov/ct2/show/NCT03312634
Location: Toronto General Hospital, Toronto, Ontario, Canada, M5G 2C4
Contact: Irene Ho, 416-340-3680, firstname.lastname@example.org OR
Contact: Suzanne Cohen, 416-340-4850 email@example.com
Principal Investigator: Angela Cheung, MD, PhD
Sub-Investigator: Lianne Tile, MD
Across Canada Events
Saturday, June 23, 2018
12 pm Registration & Lunch
1 pm Shotgun Start, Scramble format
6 pm Cocktails & Dinner only Guest Arrival
6:30 pm Dinner & Silent Auction, Raffles
Echo Valley Golf Course, London
Registration online at https://golf4brooke.eventbrite.ca
or download a REGISTRATION FORM
Calgary Ride to Cure FOP