Hunter Syndrome 30 Jun 2008 The International MPS Symposium finished yesterday after four days of fascinating presentations, fun and emotion. The International MPS Symposium finished yesterday after four days of fascinating presentations, fun and emotion. The research was unbelievable. There were presentations and updates in research on Genistein, Intrathecal trials… mcfadyena
Hunter Syndrome 30 Jun 2008 So so Many Emotions at the Symposium I’m still reeling from the International MPS Symposium that was held this past weekend in my home town of Vancouver, BC. The Symposium began with a bang. The first person… mcfadyena
Hunter Syndrome 29 May 2008 In the past two weeks, Trey has had a number of appointments in addition to his weekly Enzyme Replacement Therapy infusions In the past two weeks, Trey has had a number of appointments in addition to his weekly Enzyme Replacement Therapy infusions: neurodevelopment tests in North Carolina, ENT, opthamology, rheumatology, nutritionist,… mcfadyena
Hunter Syndrome 05 May 2008 Tacos for Trey!!!!!!!!!!!!! I still have a smile on my face from Saturday. How can I not? The number of people who supported us is unbelievable. I don’t even know where to begin… mcfadyena
Hunter Syndrome 29 Apr 2008 Trey's story featured on Shaw's 'The Express' Trey's story was featured on Shaw's 'The Express' in the week leading up to the 2nd Annual Tacos for Trey. [flv width="320" height="240"]http://treypurcellcom.nationprotect.net/video/theExpressApril29_2008.flv[/flv] mcfadyena
Hunter Syndrome 28 Apr 2008 North Shore News article about Trey The North Shore News wrote a great article about Trey and the situation in Canada with rare drugs for rare diseases. Click here to read the article. We hope to… mcfadyena
Hunter Syndrome 27 Feb 2008 Steve Nash, Rare Disease Day It is very timely that this Friday we (Canada) will be celebrating our first ever International Rare Disease Day (more about it below). This past weekend, Kirsten Harkins and Simon… mcfadyena
Hunter Syndrome 05 Feb 2008 One Year of ERT! Today Trey has been on ERT for one year. We had a small party at the MDU yesterday for his 53rd infusion with cake, presents and many many thanks to… mcfadyena
Hunter Syndrome 05 Feb 2008 A Fantastic Year Trey began ERT one year ago today. What a fantastic year it has been. He has not missed one infusion, which is unbelievable. He is growing like a weed and… mcfadyena
Hunter Syndrome 04 Jan 2008 Disappointing CDR News In disappointing, but expected news, the CDR (aka. Common Drug Review) did NOT recommend Elaprase for funding. As defined by the Canadian Agency for Drugs and Technologies in Health, on… mcfadyena