Hunter Syndrome 21 Oct 2008 In the past month and a half, Trey has had a number of tests, none of which I was really expecting. In the past month and a half, Trey has had a number of tests, none of which I was really expecting. May is usually our busy testing month. However, starting… mcfadyena
Hunter Syndrome 29 Aug 2008 The Ontario government has approved Elaprase for boys and men affected by the non-neurological form Hunter Syndrome! The Ontario government has approved Elaprase for boys and men affected by the non-neurological form Hunter Syndrome! Treating Hunter Syndrome in boys with CNS involvement is controversial and it is… mcfadyena
Hunter Syndrome 23 Aug 2008 Tacos for Trey tallies are in! Since April 1st, the MPS II Fund has received more than $57,000 - over $32,000 was raised through Tacos for Trey and another $25,000 through an anonymous donation. A very… mcfadyena
Hunter Syndrome 20 Aug 2008 Live interview on Canada AM with Simon Ibell. Live interview on Canada AM with Simon Ibell. Click here to watch it. mcfadyena
Hunter Syndrome 17 Aug 2008 In the past weeks, our good friend Simon Ibell has been busy! In the past weeks, our good friend Simon Ibell has been busy! Not only did he start a petition to pressure the Ontario government to fund Elaprase (the Enzyme Replacement… mcfadyena
Hunter Syndrome 29 Jul 2008 I have a few exciting updates! First off, Trey’s dose of Elaprase was increased on July 21 from 2 to 3 vials. I have a few exciting updates! First off, Trey’s dose of Elaprase was increased on July 21 from 2 to 3 vials. This is VERY exciting given what I learned… mcfadyena
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
