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

Thank you to FOP France for loaning us this beautifully done awareness video clip. (Subtitles)

Newmarket Ride to Cure FOP September 16, 2017 www.ridetocurefop.com

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We are proud to announce our 8th annual ride with be held on September 16th and will incorporate a walking route once again!

Thanks to the generosity of friends, family, and countless supporters, we have raised approximately $129,000 all six years combined.

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.

Phase 2 Part A Open Label Extension Trial of Palovarotene for Treatment of Patients with Fibrodysplasia Ossificans Progressiva Continues Positive Trends

Sault Ste Marie 5k Run/Walk for FOP  Saturday August 26, 2017
www.sooruntocurefop.com

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Join us for the 6th ANNUAL EVENT to raise awareness and funds to support research for this ultra-rare orphan disease.
We started out six years ago with a goal of raising awareness and funds for research in honour of Ian Brodie, a young Sault Ste. Marie resident. Ian is one of the few people in Canada(and the world) afflicted by this rare disease.
 The event was also in honour of Brooke Connell of London, ON, who was diagnosed with FOP in 2007 when she was 6 years old.  Brooke's mom, Carrie Connell, President and Founder of the Canadian FOP Network was born and raised in the Sault Ste. Marie area and still has family here.
 Come and join us down on the waterfront for walking, running, or rolling in support of FOP in Sault Ste. Marie!

Brooke Connell Golf Tournament


In Support of the Canadian FOP Network
Saturday September 9, 2017
Firerock Golf Club
(10345 Oxbow Dr, Komoka)
Registration opens at 10:00am
& Shot Gun Start at 11:30am
SCRAMBLE FORMAT
Dinner will be served at 6pm & dance to follow
Online Registration https://form.jotformpro.com/71445417805962
OR
Copy of Registration form with Sponsorship Opportunities
$150 per participant (includes dinner/dance)
$50 Dinner & Dance only ticket
REGISTRATION DEADLINE AUG 26th

Calgary Ride to Cure FOP
August 6, 2017   www.walkforfop.com

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On Sunday, August 6, 2017, we'll be walking and bike riding for a cause dear to our hearts - raising money for research into Fibrodysplasia Ossificans Progressiva (FOP). FOP causes muscles, ligaments and tendons to become converted to bone, locking joints and preventing movement. Though FOP is very rare, scientists have made great strides in developing medicines to treat the condition. In fact, there are two potential FOP drugs currently in clinical testing! We DESPERATELY want an effective treatment for FOP, so we hope you'll donate to our cause.
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Learn about FOP online