If you haven’t read part I of our interview, you can find it here. Deb Purcell, mother of Trey (MPS II, age 7), continues in her discussion of the amazing media coverage they garnered for the Once Upon a Cure gala and how she felt about the event being so close in time to Trey’s participation in the intrathecal clinical trial.
How were you able to gain such great social media and television media coverage of your event?
With Once Upon a Cure’s media campaign, there were really two campaigns. One group of media wanted to hear about the celebrities attending. That was wild. The amount of attention we got because of that was crazy. The sci-fi international community (mostly on sci-fi websites & Twitter) – who are unreal- helped spread the word like wildfire. International fans traveled from France, Germany & Ireland to attend our event. Even now, sci-fi fans on Twitter have been asking for updates on NC, Trey’s surgery etc. I even have one fan knitting a travel blanket for Trey and a number of other NC fans offering support while we’re here.
The Vancouver entertainment/social community was also an amazing support. Once we confirmed even more big name actors from the new show “Once Upon a Time” and “Supernatural”, all of a sudden we were getting interest from well known media who pay attention to and report on the “goings on” in Vancouver. I am blown away by how far reaching our message has gotten because of the celebrity factor. Even by a celebrity tweeting once about our gala, we’d gain another 100 followers on twitter.
The other campaign was medical. Trey getting into the trial was a huge blessing for him and our family, but time-wise, it was also just an amazing bonus for our event. All of a sudden reputable news channels, radio stations and papers were interested in telling our story. We were on the cover of one paper, on the second page of the next. Between the medical & entertainment events we had going on, the media attention we got for Once Upon a Cure was awesome.
What I’ve found is that you need to figure out who wants to tell what story and draft a number of press releases over time, to pitch the story to different sources. Initially we had an ‘entertainment’ press release (which at the time was mostly sci-fi) and a medical one, about me being the first mum trained in Canada to start home infusions and Trey being the first Canadian to be assessed for the trial. Then “Once Upon a Time” came on board so we drafted a “Once Upon a Time” press release. When Trey qualified for the IT trial and was enrolled, we issued a “First Child in Canada to begin a lifesaving medical trial in the US” press release, and when Jensen Ackles and Jared Padalecki RSVP’d, we sent out a “Supernatural actors are coming” press release. And each release garnered interest from different publications. But that all takes time and had I not been the driving force, always pushing for more, it would not have happened.
What would you tell someone who thinks they don’t have the time or skills to put on a fundraiser?
Anyone can put on a fundraiser. I had NO experience putting on a fundraiser before T4T. Each year people have been blown away by how much further we have come. At first I had no idea what sponsorship was. I learned. You do need time though. Anyone who has not put on a major fundraiser before, will be shocked by how much time it takes. Whether it’s family or friends, you NEED a core committee of people who will be with you from year to year. That is my difficulty. I have young kids and not enough people interested in helping long term with the grunt work. I have a kid with a progressive disease. I know that life is precious and I don’t want to miss my kids’ childhoods while I fundraise. I want to fundraise to save my kid’s life, but I’m going to miss his life while fundraising? Doesn’t make sense. And I can’t put on ‘just’ a decent event. It’s all or nothing for me… so I think we might not do a fundraiser this year and I’m going to re-group with my family.
Besides the funds raised, what are some of the other benefits of holding an event like the Once Upon A Cure gala?
Awareness. Especially with the celebrity aspect around the entire world, the awareness raised is HUGE. People may not donate the first time they hear about a disease, but if they hear about it again, it might just catch their interest, and then they might donate or they might mention it to a friend.
It is also an AMAZING feeling. As a full time mum, as parents we know, there’s not a lot of positive reinforcement. You know if you’re doing a great or crappy job, but when you’re doing great, it’s not often recognized by others. When you plan an event and you see your story in numerous papers, hear your story on radio and see it in TV, it’s rewarding. You see your hard work pay off, both in awareness and funds raised. And then you see all these people show up to ‘your’ event, for a rare disease that no one has heard of? The rush is incredible. It’s such a great feeling. Your work gets to save your kid’s life.
How special was it to have the gala so close in time to Trey starting his participation in the intrathecal clinical trial?
That part has been overwhelming for Ryan and I. So overwhelming and in so many ways. Getting into the trial helped with our media campaign incredibly. Because there was something coming up for us so soon after the gala, it has kept people interested and asking about us. It’s like the media is still going. People tweet about our gala and say that Trey’s having surgery today, their thoughts are going out for us, that kind of thing. They’ll say Trey’s having surgery, it’s not too late to donate, let’s find a cure etc. Then 20 people retweet it every time. It’s pretty cool (and makes me teary) to know how many people are thinking about us, while I sit here typing and Trey’s off in some OR getting sliced into. To save his life.