Our Mission

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 Drug Development Forum November 2014

Clementia Clinical Trial Pointer (Canadian Patients)

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

St. John Mill Rats at London Lightning Basketball
50/50 draw in honour of Brooke Connell with proceeds to CFOPN

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.

4th Annual London Ride to Cure FOP - Save the Date - Saturday July 18, 2015
www.londonridetocurefop.com

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Congratulations to everyone who participated and supported this years event! What a success, even with the downpour that lasted the entire day. We are very pleased to let everyone know that you helped us raise over $25,500.00 at the 2014 event. What an amazing group of friends and family!

5th Annual Sault Ste Marie 5k Run/Walk for FOP - 2015 date TBD
www.sooruntocurefop.com

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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 fopssm@yahoo.ca.

Interview with Ian Brodie (click here)

6th Annual Newmarket Ride to Cure FOP - 2015 date TBD - www.ridetocurefop.com

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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 ridetocurefop@gmail.com.

5th Annual Calgary Ride to Cure FOP - 2015 date TBD - www.walkforfop.com

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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.
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Learn about FOP online