About

We all know what it is like to lose someone, or to get that gut-wrenching news that there is something wrong with someone we love; and how hopeless we feel when there is nothing we can do to fix it or to help. On a personal level, sometimes all we can do is be there for that person; but on a larger scale, sometimes there is something we can do to try and help those who find themselves in this position now and in the future. That is what is at the heart of this charity: giving hope to the children, and their families, who are, or will one day be diagnosed with Hunter Syndrome.

The Purcell Family

Sadie, Ryan, Trey, Deb, Avery

On Valentine’s Day in 2006 Trey Purcell was diagnosed with a rare genetic and progressive disease called Hunter Syndrome, or MPS-II (mucopolysaccharidosis II). After Trey’s parents, Deb and Ryan Purcell, adjusted to the diagnosis, they began their quest to save their son’s life. In 2007 Trey became the first child in the country to begin the life-saving treatment of Enzyme Replacement Therapy (ERT) for the disease. During this time they also found out that there was no research in Canada devoted to finding a cure for Hunter Syndrome. Neither the government nor any other group in Canada was raising money for or funding research into Hunter Syndrome. Unable to accept this fact, the Purcells established the MPS-II Research Fund within the Canadian MPS Society (charity number: 12903 0409 RR0001) and began fundraising. Their efforts started with the annual “Tacos for Trey” fundraiser, a local event geared towards families – the goal of which was to fund one $40,000 research grant each year specifically for Hunter Syndrome research.

With this Gala, we are hoping to take the fundraising, which began with “Tacos for Trey,” to a higher level. All donations made to the MPS II Fund go directly towards MPS II research, minus a 5% administration fee. The costs associated with advocacy and fundraising are either donated or paid for by the Purcell family. Since 2007, the MPS II Fund has granted  $184, 000 to research.

To read more about Trey and the Purcells, and their journey with this rare disease, you can visit Trey’s site here: http://www.treypurcell.com/blog/.