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
Game Date/Time: Sunday, January 11, 2015, 2:00 p.m. (Volunteers arrive at 12:30-12:45pm) Location: Budweiser Gardens, London, Ontario St. John Mill Rats play the London Lightning in front of what is expected to be record crowds on Sunday, January 11th. CFOPN will be hosting the 50/50 draw and receiving 1/2 of the monies raised! Thank you to the folks at Catholic Central Highschool for nominating us to receive these proceeds and to Saunder's Highschool for helping us pull together volunteers. Come out buy tickets and enjoy the action! VOLUNTEERS needed. Please register online if you can help us sell tickets. More volunteer information HERE.
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 firstname.lastname@example.org.
Another successful event for the Herce family & friends who walked and rode in the rain this year at annual Ride to Cure FOP on September 13th, 2014 in Newmarket, ON. Thank you to everyone who joined them in making a difference! $14,000 raised and still trickling in! If you would like to contact someone about this event in the meantime, please contact Valerie at email@example.com.
Karen Munro and Kathleen Degenhardt excitedly announced that this year's funds raised on their FOP walk almost trippled last year's amount raising $16,000.00! They had a fantastic day and amazing support. Thanks so much to all who organized, particpated and supported this event.
Learn about FOP online
CFOPN is a member of:
CFOPN, 101 Brixham Cr, London, ON, N6K 1K9 Ph#: 519-641-5742