The beginning

Ever since I was 15, I've wanted to fundraise for Val. You see, my big sister Val has an extremely rare and incurable disease called FOP. That stands for fibrodysplasia ossificans progressiva. What happens to people who have FOP is that the connective tissues in their bodies (muscles, tendons, and ligaments) morph into bone, leaving the victim trapped in a second skeleton. People who have FOP lose mobility in their body until their joints are locked, or fused.

Val was diagnosed when she was 15. It was a huge shock for all of us. We didn't know anything about FOP (it's so rare that mostly only people who have FOP and their family and friends have ever heard about it) and so we googled it. That only served to terrify us more as we saw all the frightening pictures of what we assumed Val would soon look like.

However, our family has been blessed in that Val seems to have a very slowly progressing type of FOP. Although it doesn't really seem mild or slow to me, Dr. Fred Kaplan, the leading FOP researcher in the world, assures us that Val's case is relatively mild. The key word here is relative. Val's life has been significantly affected by FOP; recently she got a scooter so that she will no longer have to walk for long durations (this is very hard on her body).

The past few months have been very hard for Val. She has experienced a lot more flare-ups (a flare up is what happens when a bone is beginning to form in a new spot, it is often painful), a lot more frequently than we are used to. So I decided that my procrastination had to end and I had to act on what I've had in the back of my mind for 6 years now.

And so, I decided to bike ride from Niagara Falls to downtown Toronto to raise money and awareness for FOP. I created a facebook page and a personal donation page to start my efforts and invited everybody I knew. Initially, I intended to do the ride on my own but have been surprised (and incredibly touched) by the dozens of offers I have received from people who want to ride the whole way with me! Not only that, but I have received numerous heartfelt messages (some from people I don't even know) wishing me the best of luck and offering their thoughts and prayers for Val and my family.

The facebook group and donation page have been up for only 2 days now and we already have 380 members and $545! I am so excited and happy to see people coming together to support me in my efforts and my sister in her experiences.

I want to offer a sincere thank you to everybody who has taken the time to message me, to donate, or to offer their help. Your support means everything.

If you have not seen my facebook page here is a link: http://www.facebook.com/group.php?gid=368155889047

Also, here is a link to my personal fundraising page: http://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=6904