Only 18 people in Canada have fibrodysplasia ossificans progressiva (FOP), a rare condition in which muscles and connective tissue transform into skeletal like material that eventually leaves the person immobile as their joints fuse together.
There is currently no treatment for the condition.
One of the 18 Canadians who has the condition is the daughter of Carrie Connell, President of the Canadian FOP Network. Carrie helped form the Canadian FOP Network (CFOPN) soon after her daughter was diagnosed and as she explains it, “When my daughter was diagnosed, I became obsessed with trying to find people or researchers or doctors that could help. I put feelers out everywhere. I was blindly sending information out. Then one day, I got a call back from a doctor who specialized in muscular dystrophy and he said I know what this is and I want to help you. And then he said, get a pen.” Carrie wrote down the doctor’s advice which was a long list.
He said, “you’re going to look at the CIHR (Canadian institutes of Health Research) and you are going to look up this name and this name and this name. And then you are going to connect with the International FOP Association (IFOPA) and find out who in Canada is connected with FOP. And then you are going to form an association because without an association and strength in numbers you have nothing.”
And that is what Carrie did. Once the CFOPN was formed, they were able to get organized, share stories, and raise funds. And they are now getting ready to hopefully include Canadian doctors (and FOP patients) in a clinical trial sponsored by Clementia Pharmaceuticals. Carrie said, “the trial has begun in several countries and everything is ready to go in Canada (Toronto)— we are just waiting for the green light to start.” Right now, Carrie’s daughter is in the phase 2 clinical trial but she must go to Philadelphia to be monitored. After her hip fused and she was no longer able to travel in commercial seating, she travels by medical air transport to Philadelphia.
Taxes and CFOPN
When they formed the CFOPN, the group double registered. Carrie said, “Because we are a charity, we registered ourselves with Revenue Canada to get tax receipts but then we double registered as a non-profit incorporation. As such we have to be audited every year but we felt like that would give us more credibility.”
As a result, most of their funds raised goes to research. “We have to give at least 80% of the funds we bring in to a CRA registered research centre, “ noted Carrie, adding that most of their funds go to FOP researchers at the University of Pennsylvania but some is going to researchers at the University of Alberta (in collaboration with IFOPA).
For more information about FOP and their organization, visit http://www.cfopn.org/.