Envisioning a Hopeful Future for Families with MPS II
Welcome to the Trey Purcell site for MPS II (Hunter Syndrome) – a source of information and advocacy relating to Mucopolysaccharidosis type II, and the portal for the MPS II fund. Donations to the MPS Fund can be made online by clicking on the MPS ‘DONATE NOW’ logo, right, or by mail, phone or fax through the Events & Donations page. Click here for more information about the grants we fund.
New Promotional DVD
We’ve got it, our first promotional DVD for ‘Tacos for Trey’ and the MPS II Research Fund. I don’t want to say too much, I’ll let you watch it, but it does make me even more determined to find a cure. We are the only fund in Canada raising money for MPS II Research. Only 5% of donations go to administration, when most NPO’s put 20-30% towards admin. A little money goes a long way and I promise your money will be put to good use. We are fundraising to save Trey’s life. Please spread the word! http://treypurcellcom.nationprotect.net/video/gotHope2010.flv
3rd Spectacular Tacos for Trey
May 8th, 2010
Please join us for a family friendly fiesta, where proceeds will be donated to the Canadian MPS Society MPS II Research Fund. The event will take place at Lynn Valley Elementary School, 3207 Institute Road, North Vancouver, from 3 to 6pm.
Activities will include balloon twisting, face painting and crafts, plus live entertainment, a raffle and silent auction for the grown ups, and great food for all. It will be the most fun your kids will have with philanthropy this year! By donation. Give more than beans. Get more than gas. Click on the image, above, to view a PDF of the official 2010 poster/invitation.
With many thanks to our T4T 2010 sponsors:
Steve Nash & Simon Ibell
‘Got Hope’ T-Shirts
They’re here – stylish American Apparel MPS II t-shirts in children’s, men’s, and women’s sizes. The back has the MPS Society logo, Trey’s website address and ‘Envisioning a hopeful future for the families with MPS II’. All proceeds will be donated to the MPS II Fund. Click here for more information.
About Trey
Trey was welcomed into the world at BC Children and Women’s Hospital in Vancouver, BC, Canada, on March 1 of 2004. He was in seemingly good health, but as his 1st year passed, we experienced increasingly frequent visits to health care practitioners for various minor ailments and concerns. Then, in February of 2006, tests were ordered on Trey’s liver and spleen. So began an arduous series of appointments leading to the eventual diagnosis of MPS Type II – a rare and degenerative enzyme disorder also known as Hunter Syndrome (for more information, go to www.hunterpatients.com).
The condition was considered terminal and no treatment existed.
Enzyme Replacement Therapy
An enzyme replacement therapy (ERT) called Elaprase has since been approved by Health Canada (on June 14, 2007) and a number of other countries in the world. Fortunately, with fierce advocacy and the help of supportive health care practitioners, people within the BC Ministry of Health, and Shire Human Genetic Therapies, Trey began treatment on February 5, 2007. We believe that through nutrition, Enzyme Replacement Therapy, and alternative forms of medicine, Trey will live a long, happy, and fulfilled life.
There are other children living with MPS II who have not been as fortuitous. Unfortunately, although Elaprase is approved for use in Canada, due to Canada’s lack of an Orphan Drug Policy, this drug is not yet available for many Canadians affected by Hunter Syndrome (for more information, go to www.raredisorders.ca).
ERT is a treatment that addresses many of the symptoms of MPS, but it is not a cure, nor is it 100% effective. The MPS II Fund is in place to conduct fundraising, raise awareness, and support research in the hopes that we will find a cure so that families and children with MPS will not be limited by this difference.
Welcome
New Promotional DVD
We’ve got it, our first promotional DVD for ‘Tacos for Trey’ and the MPS II Research Fund. I don’t want to say too much, I’ll let you watch it, but it does make me even more determined to find a cure. We are the only fund in Canada raising money for MPS II Research. Only 5% of donations go to administration, when most NPO’s put 20-30% towards admin. A little money goes a long way and I promise your money will be put to good use. We are fundraising to save Trey’s life. Please spread the word!
http://treypurcellcom.nationprotect.net/video/gotHope2010.flv
3rd Spectacular Tacos for Trey
May 8th, 2010
Please join us for a family friendly fiesta, where proceeds will be donated to the Canadian MPS Society MPS II Research Fund. The event will take place at Lynn Valley Elementary School, 3207 Institute Road, North Vancouver, from 3 to 6pm.
Activities will include balloon twisting, face painting and crafts, plus live entertainment, a raffle and silent auction for the grown ups, and great food for all. It will be the most fun your kids will have with philanthropy this year! By donation. Give more than beans. Get more than gas. Click on the image, above, to view a PDF of the official 2010 poster/invitation.
With many thanks to our T4T 2010 sponsors:
Steve Nash & Simon Ibell
‘Got Hope’ T-Shirts
They’re here – stylish American Apparel MPS II t-shirts in children’s, men’s, and women’s sizes. The back has the MPS Society logo, Trey’s website address and ‘Envisioning a hopeful future for the families with MPS II’. All proceeds will be donated to the MPS II Fund. Click here for more information.
About Trey
Trey was welcomed into the world at BC Children and Women’s Hospital in Vancouver, BC, Canada, on March 1 of 2004. He was in seemingly good health, but as his 1st year passed, we experienced increasingly frequent visits to health care practitioners for various minor ailments and concerns. Then, in February of 2006, tests were ordered on Trey’s liver and spleen. So began an arduous series of appointments leading to the eventual diagnosis of MPS Type II – a rare and degenerative enzyme disorder also known as Hunter Syndrome (for more information, go to www.hunterpatients.com).
The condition was considered terminal and no treatment existed.
Enzyme Replacement Therapy
An enzyme replacement therapy (ERT) called Elaprase has since been approved by Health Canada (on June 14, 2007) and a number of other countries in the world. Fortunately, with fierce advocacy and the help of supportive health care practitioners, people within the BC Ministry of Health, and Shire Human Genetic Therapies, Trey began treatment on February 5, 2007. We believe that through nutrition, Enzyme Replacement Therapy, and alternative forms of medicine, Trey will live a long, happy, and fulfilled life.
There are other children living with MPS II who have not been as fortuitous. Unfortunately, although Elaprase is approved for use in Canada, due to Canada’s lack of an Orphan Drug Policy, this drug is not yet available for many Canadians affected by Hunter Syndrome (for more information, go to www.raredisorders.ca).
ERT is a treatment that addresses many of the symptoms of MPS, but it is not a cure, nor is it 100% effective. The MPS II Fund is in place to conduct fundraising, raise awareness, and support research in the hopes that we will find a cure so that families and children with MPS will not be limited by this difference.