Friends With FOP

In May of 2008, I was working at home one day when we received a letter from the International FOP Association.  I read the enclosed letter, and was very interested to learn that a family in London, Ontario was trying to rally Canadian families to form a Canadian FOP organization.  Fast forward to the present, 15 months later, and during the last few days I’ve been doing paperwork connected to the group we created.  Naturally, this has made me think a lot about the Canadian FOP Network…

When we received the letter, I was delighted.  We had been part of the Fibrodysplasia Ossificans Progressiva community for about a year at that point, and I had been disappointed that we had only made contact with one other Canadian FOP family.  I really wanted us to get to know other Canadians dealing with FOP.

The letter was from Carrie Connell and her husband Cam, who’s daughter, Brooke had been diagnosed with FOP at age 6, just one month before Miranda.  Carrie had big plans – she envisioned forming a group devoted to raising awareness of FOP in Canada and fundraising for FOP research.  I got in touch with Carrie right away and told her I wanted to be involved in any way I could.

The odds were, unfortunately, kind of stacked against us.  If the world-wide population of people with FOP is small, the Canadian population would be miniscule – in Canada we have about 30 million people, and since FOP affects roughly 1 in 1.6 million, there should be about 15 to 20 Canadians with FOP.  Yikes; not a big population base for a new charity.  Still, we wanted to give it our best shot.

I got to know Carrie Connell a bit, and was impressed to learn that she is an events coordinator for a disabled children’s rehabilitation organization in London.  This, as it happens, is a pretty darn good background if you’re trying to put together a group like ours…!  Carrie intuitively realized early on that a big FOP-related event would be an effective way to get the ball really rolling for our group, and she announced almost immediately that she had arranged for Dr. Fred Kaplan, the world’s medical authority on FOP,  to come to London in May of 2009 and meet Canadians with FOP.  Wow, wow and wow.  Pretty quickly, Carrie had conceived of a Canadian FOP conference to coincide with Dr. Kaplan’s visit, and she immediately began planning it.

Before we could do a great deal to plan the conference, however, we had to become legally constituted as a group.  This was where I was able to lend some expertise.  OK, I’m not a charities law specialist, and have no experience in that area, but as a lawyer I at least knew generally the types of hoops we’d have to jump through and the steps we’d have to take to get us to our destination.  After some discussion on the subject, we confirmed our initial plan to form a charity recognized by the Canada Revenue Agency, because as a charity, we’d be able to give donors official receipts to reduce personal income taxes.  The first step was to incorporate the Canadian FOP Network as a not for profit organization, and I did that for the CFOPN in September of 2008.  Carrie became our first president, with me as vice-president.  Our board members were Carrie, me and Corrine Bigras (mother of Adam Bigras, age 22 with FOP). 

The next 6 months were a blur of plans for the first ever Canadian FOP Conference, and getting ourselves ready to apply for legal status as a charity.  It had kind of shaken down that Carrie and I were the members of our group most interested in organizing, so we took the bit in our teeth and ran with it. 

Carrie ended up doing about 95% of the work to plan for the conference, and I must say she was superbly suited for it with her professional background.  By the time the conference finally happened at the end of May in 2009, she had arranged a terrific event with multiple speakers, group discussions and a dinner.

At our conference dinner, Miranda decided Carrie was her new best friend...

We ended up with 7 Canadian FOP families attending, as well as 1 from the Netherlands and 1 from the Ukraine, plus multiple interested doctors, scientists, friends and others.  It really was an amazing experience, and so very worthwhile.  And, I finally had concrete proof that my Miranda wasn’t the only person with FOP in Canada…  

Since Carrie was so effectively handling the conference plans, I concentrated on the charity status application.  I finally got the application out the door and in the mail by January of 2009.  Let me tell you, that was one very complicated form…  I think it was about 12 or 13 pages long, and required a great amount of detail about our plans, goals and methods.  I will definitely say that the Canada Revenue Agency is EXCEPTIONALLY careful about the process of granting charitable status.

We got word on our charitable application earlier this month (July 2009).  Unfortunately, we were rejected.  Rejected!!  At first we were devastated.  However, I did a bit of digging around and learned that a large number of groups are rejected on the first go-round, and that generally it’s necessary to make some changes, jump through some hoops and polish things up before the CRA will approve a charity application.  So, I set about modifying our documents as needed, and actually, we didn’t need to make a great number of changes.  This was the paperwork I refered to earlier.  We are now optimistic and hopeful that we’ll have our application approved by the end of the year, and will be able to move ahead.

Wish us luck!  I really hope that before long, I’ll be able to announce that Canadians can donate to a newly minted FOP charity.  Please remember us!

Facebook readers: this blog originated at www.friendswithfop.com.