About the Network
The Canadian FOP Network is a 100% volunteer non-profit charity founded in 2008 by Carrie and Cameron Connell after their daughter, Brooke, was diagnosed in 2007 at the age of 6 years old.
The Connell's searched throughout Canada for a researcher working on this unbelievably medieval condition, but there was nobody. Nobody working on answers and nobody specializing in this condition or interested in starting research because of it's rarity. Most doctors and researchers did not even know what Fibrodysplasia Ossificans Progressiva was. Researchers were pleasant and apologetic, but could not offer any help. It was a very lonely and humbling experience.
In a very touching phone call, an Ottawa Neurologist, researching Muscular Dystrophy, reached out to the Connells. He had heard of this disease and had children of his own, the same age as Brooke, and understood how desperate they where to help their child. He told the Connells to get a pen and paper and jot down what he was about to tell them and he proceeded to detail steps to take, important contacts, and what would need to be done to build something in Canada.
The Connells were soon joined by the Karen Munro and Peter Friz, a family in British Columbia whose daughter, Miranda, had been diagnosed with FOP just prior to Brooke. Karen Munro, a lawyer, had also been looking for other families in Canada and eagerly joined efforts. Karen's legal background was key in helping with the formation of the non-profit charity along with Karen Lyons, an accountant and Brooke's aunt, who also developed their first website and became the volunteer treasurer for the charity.
Since then, they have been joined by family, friends and their communities across Canada fundraising for research and bringing hope to children and adults afflicted with FOP.