Introduction

On Valentine’s Day in 2006 Trey Purcell was diagnosed with a rare genetic and progressive disease called Hunter Syndrome, or MPS-II. After Trey’s parents, Deb and Ryan Purcell, adjusted to the diagnosis, they began their quest to save their son’s life; this is when they found out that there was no research in Canada devoted to finding a cure for Hunter Syndrome. In 2007 Trey became the first child in the country to begin the life-saving treatment of Enzyme Replacement Therapy (ERT) for the disease.

Unfortunately, since Hunter Syndrome is classified as an Orphan disease, most children diagnosed do not have this option. To that end, and to help fund further research to help save their son’s life, the Purcells began hosting the annual “Tacos for Trey” fundraiser, a local event geared towards kids – the goal of which was to fund one $40,000 research grant each year specifically for Hunter Syndrome research.

            After discovering that there was no designated fund for researching MPS-II, the Purcells established the MPS-II Research Fund, within the Canadian MPS Society (charity number: 12903 0409 RR0001). In order to continue to raise money for MPS-II research, as there are currently no other fundraisers in Canada specifically devoted to funding research for Hunter Syndrome, we have decided 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 over $110, 000 to research, and by March 2011 will have funded another $50, 000 grant.

            Ryan Purcell, Trey’s father, has worked in the Vancouver film industry for years as a steadicam operator. Over the years he has seen countless examples of the generosity within this community, and in this instance we are asking for your help in putting together a gala with proceeds going directly into the MPS-II Research Fund.

 

Got Hope: Living with Hunter Syndrome. 

Trey Purcell.com ⇢

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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.


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