Meet Deb Purcell, the amazing mom to Trey, age 7, with MPS II. Deb is a tireless advocate and fundraiser who graciously granted this interview while she sat in North Carolina, waiting while her son was in port-a-cath surgery to begin his participation in the intrathecal clinical trial. We post today in honor of her son’s first intrathecal dose which successfully occurred this morning.
Deb and her husband Ryan recently held an event, the Once Upon a Cure gala, which raised over $90,000 for MPS II research. We spoke with her about the event, what it takes to be a fundraiser, and her emotions leading up to Trey’s participation in the clinical trial.
Could you tell us more about the background behind the Once Upon A Cure gala?
When Trey was diagnosed, we found out that no one at the time was fundraising for MPS II research in Canada. Not even the Canadian MPS Society had ever funded an MPS II Research grant. Having a child with a progressive disease, this was unacceptable. It didn’t feel like an option not to fundraise. So, Ryan and I found a charity lawyer and started an MPS II Research Fund under the umbrella of The Canadian MPS Society.
Our first fundraiser, Tacos for Trey, was held at our home. Fortunately it was sunny because so many people showed up, there was no way they could all fit in our house. We had tacos, drinks, a silent auction and raffle (and street hockey and a piñata for the kids). The backyard was packed. The next year we moved our fundraiser to a school and held it there for another year.
How did you first come up with the idea to switch to a gala from your original fundraiser?
After 3 Tacos for Trey events, we decided to hold a gala, with the hopes of raising more money for research. Ryan works in film and has worked with a number of celebrities. We felt that this is a group of people who could display passion and awareness on a broader and more public scale, to help MPS II awareness and research. And that’s just what we did.
Who was behind all the organizing, did you have a committee and if so, how did you find those people?
With Tacos for Trey, I was the event coordinator. My mom did a lot of background grunt work and my sister led the raffle and auction. My dad would help with auction pick up, odds and ends and my whole family would babysit while I worked. Then we had a number of family and friends volunteer at the actual event. This is how it initially started with the gala, but about 4 months before the event, I realized it was too much for me to coordinate. So, one of our volunteers who is an event coordinator and found us on Charity Village, agreed to step up as event coordinator. The rest of our core volunteer committee found us through advertising or friends.
What were the few decisions you made that were critical to the success of the event?
Gosh… well, I have realized that any successful event needs a driving force. I am that force with our fundraisers. I could step back and let someone else run an event for us, but it would not be the same. The attention and time and love would not be comparable to that of a mom on a mission. As the event got closer, I was personally motivated to find out if various forms of media had been approached and if not, I was the one to reach out and follow up, or make sure we were tweeting daily. And when mistakes were made (and they always are when putting on any kind of event), I was the one to make sure apologies and reconciliations were made to an extent that relationships were repaired. The event would have come off either way, but not with the same love as a mum’s love.
Ryan was also key because had it not been for his connections and friendships, we would not have attracted the celebrity guests we did. And of course, we could not have done without our event coordinator Heidi. I would have gone crazy or collapsed had it not been for her. Because of her, I was able to step back from the lead role and focus on the “extras”. I could step in when people got sick or busy with other life events, I had time to tweet daily and respond to people’s tweets. Basically, Heidi taking over the lead role gave me time to put the extra love into the gala.
What were the different methods you used to raise funds with the event?
Donations are big. Especially this year, when tickets were expensive [$250 per ticket] and not everyone could make it, donations are HUGE. Even for people who wanted to attend but live far away or for people who are local but were out of town during our event, it needs to be made clear that even if you are unable to attend, donations can be made in support of the event and cause. At Tacos for Trey, we had a silent auction, raffle, food and drink sales. In addition, people donated to do crafts: get faces painted, bead bracelets etc. However, there were also a number of free activities.
At Once Upon a Cure, funds were raised via an online auction of donated celebrity items on eBay, a live and a silent auction at the event itself, a raffle held at the event, tickets to the event and general donations.
Read Deb’s blog post about the event and return for our next post about how she garnered such amazing media coverage and the emotions of holding the gala right before Trey’s participation in the intrathecal clinical trial.
Enjoy beautiful pictures from the event!
From MPS II Research Fund (369 items)