Rock to the Lock: locally-grown fundraiser to support people with Cystinosis

In August 2016, Thorold-born Dan Giancola, well-known for his prolific career in the Canadian Football League, will be partnering with 9-year old Abbi Monaghan to run a fundraiser called “Rock to the Lock,“ in which he will bike from New Brunswick to Thorold to raise awareness and funds for Cystinosis research.

Monaghan is a 9-year old resident of St. Catharines with a fun-loving, energetic personality who loves gymnastics, Taylor Swift and cooking (with a dream of owning her own food truck one day). She also has a rare, incurable disease called Cystinosis, which slowly destroys the organs in the body including the kidneys, liver, eyes, muscles and brain. The disease means that Monaghan takes up to 35 doses of medication every day, faces debilitating side effects and symptoms, and faces many barriers towards living the quality and style of life that she deserves.

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Cystinosis is a rare disease, affecting about 2,000 people. Because of its rareness, there are few fundraisers to promote research, and so there is not too much research money available to study the disease and potential treatment. The lack of awareness, research funds, and donations means that people with Cystinosis do not have as much support as those with more common or well-known illnesses. However, despite the disease’s rareness, the people who have it are still in need of better treatment options, support, and the potential for a cure.

“It’s been considered an orphan disease, so it lacks a lot of support,” said Erin Mitchell, Nursing student at Brock who is using her Community Health Nursing placement to support Rock to the Lock and Cystinosis awareness. “We have a little girl in our community who suffers from this: why wouldn’t we want to raise funds to help her?”

In addition to the ethical call to help out a valuable member of the St. Catharines community who is struggling, Mitchell also emphasized that Cystinosis research is not an isolated cause, but actually has a particularly high potential to help advance research for other illnesses and diseases that are more common.

“It’s not only rare, but it affects every cell and every organ in the body,” said Mitchell. “Because it affects all of these things, research into this disease can lead to cures for other diseases, and provide a lot of information that will help out other areas of research.”

One person who saw the need for more support for patients of Cystinosis was Dan Giancola. Giancola was born in Thorold, and went on to play for the Toronto Argonauts and several other CFL teams, ultimately playing for two Grey Cup championship teams.

Giancola now owns and operates a gym in Thorold called BTO Performance, and he is a prominent member of the Niagara community who does regular volunteer work in the area. While volunteering at a local charity event, Giancola met Monaghan, and the two got to know each other very well. After developing a friendship with Monaghan and helping her get involved in BTO, Giancola decided that he wanted to do something to help her with the disease that affects every aspect of her life. In response to this desire to help Monaghan, the idea for Rock to the Lock was born.

The name “Rock to the Lock” refers to the route that Giancola will be biking. He will travel from The Rock Provincial Park (also known as Hopewell Rocks) near the Bay of Fundy in Moncton, New Brunswick, to Lock 7 in Thorold, Ontario. The aim of this bike route is to raise awareness and funds for Cystinosis research. Rock to the Lock welcomes support in the form of donations, as well as in the form of volunteering time to help with the campaign. The campaign website will also be listing the route itinerary so that anyone who is interested can look up when Giancola will be in their area and they can participate by riding along in support, sponsoring a leg of the ride, holding a fundraiser, or holding a meet and greet.

Central campaign figures Dan Giancola and Abbi Monaghan

Central campaign figures Dan Giancola and Abbi Monaghan

At Brock, Mitchell is hoping to bring the event to the attention of the Brock community to receive their support. Mitchell is currently looking to partner with a Brock varsity game in order to raise funds and awareness for Rock to the Lock, and she is pursuing other initiatives with the goal of involving the Brock community in the campaign.

Rock to the Lock is a chance for Brock students to give back and help support a valuable member of the local community. It is also a chance for Brock students to reach outside the borders of campus to help out the larger St. Catharines and Niagara community of which they are a part.

For more information, check out rocktothelock.com for the official website, or rocktothelock.wordpress.com for the campaign’s blog. For more information on Mitchell’s Brock initiative, she can be contacted at em11or@brocku.ca.

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