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What is FOP?

Fop stands for Fibrodysplasia Ossificans Progressiva, one of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.

Why do we ride you ask?

I (Val Herce) was diagnosed at the age of 15 with this extremely rare genetic condition. To say the time from my initial symptom that led up to my formal diagnosis was terrifying would be an understatement; for myself and family. This diagnosis is something you wouldn't wish on your enemy. Day to day activities are hard to complete but the only way to stay as healthy as possible is to not focus on the bad. With the help of never ending support and love from my family and friends, I live a life as normal as I can manage. With everything in life, there are good days and there are bad days. I try to have more good days =)

Our first ride started in 2010 when my younger sister Vanessa (who was 21 at the time) had the idea of riding from Niagara-on-the-lake to Queen's park in Toronto by herself and raising $500 for research. Her idea quickly caught on! My Dad, other siblings, cousins, and friends joined Vanessa in riding, with myself, my Mom, cousin and Aunt & Uncle to support them along the way. By the end of the ride we raised approximately $33,000 and had a great picnic to celebrate the great success!

Over the past 9 years, we have raised over $130,000!!!


I can't even begin to describe the joy and the pride I feel when I think of what we're doing. This is not only helping me, it's helping all the babies, children, and adults who face everyday with FOP. With every fundraiser held, we get that much closer to a treatment and a cure for FOP.

Even though FOP takes away my ability to give a hug or a high 5, please know that I am sending virtual hugs and/or high 5's to everyone who has spread the word, donated, helped organize, and finally to the riders, walkers, and support team.

 

Please visit our Facebook page; Ride for Fop for updates.

 

Thank you all for you continuous support, love, strength, hope, and faith.

We WILL beat FOP!

 

Let's make it happen!