On June 17, U of T student Vanessa Herce rode from Niagara Falls to Toronto to raise awareness for Fibrodysplasia Ossifcans Progressiva (FOP), a condition her sister Valerie was diagnosed with at the age of 15.

FOP is a rare condition that causes the muscles, tendons, and ligaments in the body to turn to the bone. Ribbons, sheets, and plates of bone develop in the soft connective tissue causing joints to lock in place and stop moving. People with the disease experience frequent swellings, known as flareups, which occur without warning and are worsened by trauma to the area.

In April 2006 Dr. Frederick Kaplan at the University of Pennsylvania discovered that FOP is caused by a mutation of a gene involved in skeletal formation. The average time to correctly diagnose the condition is 4 years.

Vanessa embarked on the 130km bide ride to raise awareness of the disease while raising funds for research. There are only 30,00 known cases of this currently incurable disease around the world and very few treatment options are available. Vanessa and Valerie hope to change this.

“[Valerie] always talks about when we have a cure, not if,” Vanessa said.

Vanessa created a Facebook page for her ride and with the support of her friends and family quickly reached her goal of $1500. By the date of the ride over $30,000 had been raised, twice the 2010 fundraising goal for the Canadian FOP Network. The ride also succeeded in raising awareness, catching the attention of Rogers TV, and several community papers.

The Canadian FOP Network became a registered charity in 2009. The mandate of the organization is to increase awareness of the condition and to provide support to individuals with FOP and their families in Canada.

“She’s really excited about how much we’ve raised and she’s even making a list of the things she wants to do when they have a cure for FOP” says Vanessa.

Valerie accompanied her sister on part of her ride on her motor scooter. Family and friends also joined the ride. “Having all these people in your corner is amazing,” says Valerie.

You can learn more about Fibrodysplasia Ossifcans Progressiva here.