What a Day

Our Tacos for Trey fundraiser yesterday was awesome. It was as close to perfect as a first annual fundraiser could be. Where to start…I’ll go in order. First off, we had at least 10 people come early to set up, cut up veggies, get the raffle and auction organized etc. And in the days leading up to the event, we had as many people picking up rentals, food and raffle/auction items, as well as making signs, painting our house etc. And, besides a few hundred dollars our family spent on beer, decorations and some other things, all at no cost to us or our fund, we did not pay for anything. Absolutely everything raised in our fundraiser is going into MPS II research. We’re pretty excited about that.
So, let’s talk about the amazing people who donated. A smallish and local company called Blue Goose Cattle Company donated 60 pounds of organic ground beef (and if anyone knows how much organic ground beef costs…), Save on Foods donated pop, all of our produce, beans, taco shells, and taco seasoning, margarita mix, and they spoke to Kraft on our behalf, who donated our cheese and sour cream (and this is all food for 300 people). Que Pasa donated chips and fresh salsa, Safeway donated pop, bottled water and more chips and salsa, and Canadian Springs Water donated a water cooler and 5 jugs of water. Happy Planet donated 300 juices, Caravan donated tents, Super Value in Deep Cove donated ice, Paper Parade gave us a discount on decorations, and Molson donated ten dozen beer, even though our event did not fit into their criteria for donations (apparently our cause pulled a few heart strings). This doesn’t even include auction/raffle items, most of which were donated by our awesome friends and family. THANK YOU TO ALL WHO MADE DONATIONS.
The event: around 3:00pm, a camera crew came to interview me for the launch of Elaprase in Canada. They interviewed me and then filmed our family and the fundraiser getting into the swing of things.
People started showing up right around 3:00pm and things didn’t slow down until after 6:00. Friends from elementary school, high school, college and university came, film friends, family friends, friends of friends, work friends, parents of friends, intermediate and extended family came, people we hadn’t seen in years came. It was so much fun.
The catching up was great, but the really cool part (and tears are now in my eyes saying and thinking about this), was the support. Hundreds of people we know, barely know, don’t know, and used to know, came to support Trey and our family. It was truly touching. Ryan was pretty emotional and my sister, who rarely cries (the last time I saw her cry was at my wedding, and before that I cannot recall), cried. I still cannot believe how many people came. To have this kind of support…I’ll never forget it. LoriAnn Bradley, a Shire representative who I’ve heard of many times but never met came, as well as Kirsten Harkins, the ED of the Canadian MPS Society.
What got me crying (I’ve gotten so used to talking about ‘the diagnosis’ it rarely makes me cry anymore) was when Dr. Potter and Dr. Muenzer came. There was a biochemical disease meeting in Vancouver this weekend (total fluke), so a number of MPS related doctors and professionals were in town. Kirsten said she’d try to get some doctors to stop by, but never in a million years did I think that they’d actually come.
Dr. Potter came first. What an honour that he came. He told us a bit about himself, his family, how he got into researching MPS II, and gave us more information about his research. I got caught up when, after asking his permission, we introduced him to the crowd. My mom did it, but I still cried. “Please welcome to our house, the man who we are raising all this money for. The man who is researching to find a cure for our child’s disease. He’s standing here in our yard!!” That one got me teary. And until he met Trey, he’d never met a child or family affected by MPS II. I hope we inspired him to stay in the field.
Then came Dr. Muenzer. Dr. MPS II himself. At our house. We first met him back in November 2006 when we went to North Carolina (he works at UNC) for assessment. I tried to book another appointment to see him when we go back to NC in a few weeks to see Dr. Escolar, but he will be out of town when we are there. So he decided that since he won’t be there when we come to his town, he thought he’d come for a visit when he came to ours.
He is amazing. He’s so good with Trey and he is kind and wonderful and experienced and so incredibly knowledgeable. For those of you who don’t know, he was the man who ran the trials for Elaprase. I got to ask him about Trey’s infusion #13, I asked him about upcoming intrathecal trials which will put the enzyme directly into the brain, I asked him about high dose ERT, which some boys in the US are trying, and I got to hear his thoughts on treating both attenuated and severe children affected by Hunter’s with ERT, which is a very controversial issue, especially in Canada.
And last but not least, I got to hear a bit about himself and how he got to where he is. He came during the latter part of the fundraiser and he stayed until about 9:30pm. For about 2 hours I got to sit with Kirsten Harkins and Dr. Muenzer and just talk. It was surreal and unbelievable and great.
From the people I talked with today, the event was a big hit. And more than just fun. People ate tacos, drank margaritas, hit the pinata, played hockey and chatted. I had a great time, but it sounds like most everyone else did too. The energy and atmosphere was great. People came to have fun and support a great cause. And to give you numbers, we raised over $17,000 yesterday. That, along with over $5,500 raised for the fund leading up to the event, as well as a know $8,500 which will be going into the fund in the next weeks, and we raised over $30,000 for the MPS II Fund with this event. We are thrilled
Our goal was $24,000. SO THANK YOU FOR ALL WHO SUPPORTED US, WHO MADE DONATIONS, WHO CAME TO THE EVENT, WHO HELPED US BEFORE AND DURING THE EVENT…YOU HAVE NO IDEA WHAT IT MEANS TO US. THAT WE RAISED OVER $30,000 FOR TREY AND MPS II…YOU ARE AMAZING AND WE ARE SO GRATEFUL. THANK YOU THANK YOU THANK YOU. WE LOVE YOU!