Join us for the 7th ANNUAL EVENT to raise awareness and funds to support research for this ultra-rare orphan disease.
We started out in 2011 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.
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.
Come and join us down on the waterfront for walking, running, or rolling in support of FOP in Sault Ste. Marie!
Date: Saturday, August 11th, 2018
Time: Registration 9:00 am - Event starts at 10:00 am
Location: Roberta Bondar Pavilion, course runs along waterfront boardwalk