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
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.
FOP patients from Canada may be considered for enrollment into the palovarotene Phase 2 clinical trial. Read more....
London International Airport BBQ
On July 24th London International Airport hosted a BBQ with the proceeds benefiting the Canadian FOP Network! The BBQ was very successful with $700.00 being raised as airline employees, travelers, etc. bought hotdogs and hamburgers. Thanks so muc
NEW LOCATION THIS YEAR! Same route for ride/run and walk along the Thames River bike paths, but our starting/ending point will be just the other side of Wonderland where there is a covered bandshell (after our very wet event last year). Come and join us, your support is making more of a difference now than ever before with many research projects in the works including 3 live drug trial sites!
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.
Karen Munro and Kathleen Degenhardt are excited to announce the date for this year's event. Last year they raised $16,000.00 for research and with your help they are hoping to do it again! Interested in participating or making a donation? Please follow the website link for more information.
Learn about FOP online
CFOPN is a member of:
CFOPN, 101 Brixham Cr, London, ON, N6K 1K9 Ph#: 519-641-5742