ONCE UPON A CURE – A GALA FOR HUNTER SYNDROME RESEARCH
September 24, 2011
Just like Alice plunged into Wonderland, all families diagnosed with MPS II are plunged into a world previously unknown to them that they must learn to navigate. Just like Alice, this world is beautiful and nightmarish at the same time. Thank you for joining us for a truly unique, wonderful, and unpredictable, Gala where we were able to raise enough money to fund a $100,000 MPS II Research Grant! We truly appreciate all the support we received from attendees, sponsors and all our hardworking volunteers. Thanks to everyone who came out to share in celebrating the joy of life and raising critically needed funds for research. www.onceuponacure.com
TACOS FOR TREY
May 8th, 2010
Click here to check out hundreds of photos from T4T 2010. Thanks for shooting the event, Michele!!
2ND ANNUAL TACOS FOR TREY
May 3rd, 2008
The second annual Tacos for Trey on May 3, 2008 was a huge success. We raised over $18,000 on the day and over $32,000 in total!!
1ST ANNUAL TACOS FOR TREY
May 5th, 2007
At the first annual Tacos for Trey we raised $17,000 on the day, and $30,000 in total.
POKER FOR TREY
For the past two years, our dear friend Grizz Salzl has organized a poker tournament to raise funds for the MPS II Research Fund. To say we are honoured, would be an understatement. Just the thought, to do something this generous, shows what a big and kind heart he has. And then to follow through, to take the time to organize a fundraiser, for our son’s rare disease, when he has a life and family of his own, is touching beyond words.
In 2011, Poker for Trey raised $1,905.00 for the MPS II Research Fund.
In 2010, Poker for Trey raised $2,015.00 for the MPS II Research Fund.
Special thanks to Grizz and to everyone who participated. Your donations will go a long way to help find a cure for MPS II Hunter Syndrome.
DARWIN GOLF TOURNAMENT
At Tacos for Trey 2010, Grizz Salzl and Aimee & Oliver Webbe approached me with the news that they were going to hold a fundraiser on our behalf. You’ve read about Grizz and Poker for Trey above. Aimee and Oliver’s idea was to donate part of the proceeds of their yearly Darwin Golf Tournament to our MPS II Research Fund. What I said above about Grizz, well, I can say the same for Aimee and Oliver. That two groups of people have the kindness and generosity to join our mission to find a cure for MPS II Hunter Syndrome makes my heart grow in gratitude and with love for our wonderful friends. Aimee, Oliver and to everyone at Darwin Construction, thank you.
The 2010 Darwin Golf Tournament raised $5,535.00 for our MPS II Research Fund.
DARWIN PRESIDENT DAVID WEBBE and VICE-PRESIDENTS HERB WYCHERLEY & OLIVER WEBBE
To read more about Darwin Construction, please go to: http://www.darwinconstruction.ca/
TIME FOR A CURE – A UNIQUE CELEBRATION OF FAMILY AND A FUNDRAISER FOR THE CANADIAN MPS SOCIETY
We raised $13,000 with ‘Time for a Cure’ 2009!!!
‘Time for a Cure’ was born of the need for a break from the workload of a large fundraiser like ‘Tacos for Trey’, but with the desire to continue fundraising for a cure. On May 2nd, 2009, families around the world enjoyed a day with their families for MPS II. People could pledge participants, who shared the stories of their day on our ‘Time for a Cure’ website. Participants were then entered in a draw for a number of awesome raffle items.
LOVE DEB, SADIE, RYAN, TREY & AVERY
TOP PARTICIPANTS
Deb, Ryan, Trey, Avery & Sadie Purcell
We had a great day today. We began by spending the morning with a close family friend, Andy McFadyen. I wrote about his stay with us in my blog on Trey’s website, but his son, Isaac, has MPS VI. We have a wonderful connection with their family and spending our “Time for a Cure” morning with a dad who knows exactly how badly we want a cure for our son was fitting.
Then my mom came over to spend her “Time for a Cure” moments with Trey, Avery and Ry. She went to Trey and Avery’s baseball game (you can see a picture when she uploads her story… Heather Cehak). Trey always has a blast at baseball. He’s just an awesome athlete. Apparently (I don’t take the boys, Ry does) Trey can hit the ball quite far and hard and accidentally (and for the dad, unexpectedly) hit a dad, who was in the mid field, hard in the thigh. Oops! Ave is also getting into baseball and really enjoys it, not surprisingly since sports are a big part of our family. After baseball, my mom took Trey, Ave and I to go get Trey’s belated (March 1) birthday present (she was in Mexico at the time). She got Trey and Ave Super Soakers and Trey a scooter as well… as I type the boys are outside soaking themselves, the house and our garden.
And for our “Time for a Cure” afternoon, we chose to spend it going to the Miniature Trains in Burnaby (a first time for us, but quite close to our house) and then going out for dinner. The picture was taken of us just before we left on our train ride! Ave had millions of questions about everything (it was a steam engine, so I had lots of questions too!), Trey was right into waving at everyone that we passed and was more interested in playing with the other kids on the grass than riding the train over and over (as Ave and I did), and Sadie just watched and took everything in.
Dinner was nice because we didn’t have to cook or clean up and we got to watch some of the Canucks game (we don’t have cable so can’t watch at home).
If you’ve spent much time on Trey’s website, you’ve seen me put my heart and soul on the internet. Here I’m hoping to let others do some of that. For now I will say: thank you to everyone who has supported us in this fundraiser and in past fundraisers. We couldn’t do it without you and your continued support means so much to us. We will not rest until we find a cure, so you helping us keep hope with us along this journey fill our hearts. Without hope we have nothing.
I hope you have had a wonderful day.
Thanks again for your support.
Love Deb, Ry, Trey, Ave and Sadie
Heather Cehak
TIME FOR A CURE Yesterday, May 2 was a very special and important day for me as it is a day we set aside each year to acknowledge the children and families who are dealing with a family member(s) who has MPS. We want to find a cure and it is possible. There are many dedicated people – parents, doctors, researchers, family and friends who are working towards a cure but without our support their efforts are limited.
Help us help Trey, my grandson, and other people with MPS. Our day yesterday started off with a delicious breakfast which we shared with our Japanese student. Of course, new lessons in English were a part of our morning. Soon after I left and joined Ryan, Trey and Avery at their softball game. It was great fun! All parents participate in some way helping the coaches work with twenty, three to five year old children. The children had a ball and although they were often distracted by the amount of activity around them they learned a lot.
Following their game Deb and the boys and I went to the store as I wanted to buy Trey a belated birthday present. I gave Trey a scooter for for his birthday and as only grandparents can I spoiled the boys and bought them each a super soaker. Being a grandparent of such great kids is amazing and lots of fun.. When I came home I spent the rest of the day with Gerry down at the sailboat and then home watching the Canucks play against Chicago. Please help us help our kids. No amount of money is too little. It is ’TIME FOR A CURE!’
Ayasha Valji
This cute little monkey is Aidan Brady Horwood and today is her first birthday. She actually decided that she wanted to join us in the outside world at Tacos for Trey last year. Her mom, Alanna, started having contraction soon after eating a bean taco at T4T last year and the next day Aidan was born.
Aidan’s mom, Alanna, has been my best friend since we were both 3 years old. Having known each other for 28 years, Alanna and I are very close – so when she had a little girl it was possibly the closest I’ve ever felt to a little baby. I was there in the hospital with Alanna when she gave birth to Aidan (massaging her back and feet through the contractions!) and Alanna often tells Aidan, “Here’s auntie Ayasha. She was there when you were born, you know”. We can’t let her forget that!
So on this special, time for a cure, day I spent the afternoon with Alanna, her husband Ron, Aidan and all their family celebrating Aidan’s first birthday. I can’t believe that a year has already passed; I feel like she was just born a few months ago.
Not only do i get to watch Aidan grow and change, but I’m also lucky enough to see Trey, Avery and Sadie on a regular basis so i get to see them learn and laugh and just be silly – it’s a wonderful priviledge and I’m so glad I can be a part of their lives.
ps. We had cookie monster cake – it was great! 
Linnae Bee
On Saturday we travelled to northern BC to visit family. We enjoyed many days of exploring forests and looking for treasures in the wild. This picture is taken in a remote forest in Kitselas Canyon, 20 minutes east of Terrace. We learned so much about our family and also about pioneers and First Nations people in the area. Our best trips are ones like this where get the chance to escape the city and have some real rest and relaxation. It always amazes me how much fun and enjoyment we seem to share in simple outings. Great Grama took this picture—she’s 91 years old! We’re so lucky to have so much time together…
Lots of Love,
Linnae, Guy, Pius & Julius
xoxo
Salim Hirji
On June 20, 2009, I will be riding in the 2009 Test of Metal, a mountain bike race in Squamish that covers 67 km in distance, and more than 1200 meters of elevation gain. It’s a tough race, and a huge challenge for me. I don’t harbour any illusions of winning – my modest goal is only to finish the race, which I expect will take me just over 5 hours.
Although the Test of Metal is not a charity event, I was inspired to ride in the race by a 5-year old boy named Trey Purcell, who has a rare condition called Hunter Syndrome, or MPS II. Hunter Syndrome inhibits the body’s ability to break down and recycle certain enzymes, which in turn interferes with the functioning of the body’s cells and organs. There is currently no cure for MPS II. Research is ongoing, but it is heavily dependent on private funding.
At the age of five, Trey has already faced more challenges than most of us will face in a lifetime. I hope you will take a few minutes to learn about this rare disease, and support the research that could lead to a cure.
For those of you who want to know more about the Test of Metal, the race website is http://www.testofmetal.com.
