Hunter Syndrome 23 Jan 2012 Trey’s Bilateral Carpal Tunnel Release The procedure was 4 hour and 15 minutes. Trey’s surgeon, Dr. Verchere, booked him for 3 hours, thinking it would be plenty time. There was a lot of scar tissue… mcfadyena
Hunter Syndrome 16 Jan 2012 An unexpected call I got a call today. It was a long distance call and I thought it was a telemarketer. I was about to tell this woman I was busy, when she… mcfadyena
Hunter Syndrome 15 Jan 2012 Expensive drugs for rare diseases : an anthropological analysis of the cultural, political, and economic dimensions of metabolic disease For anyone affected by a rare disease worldwide, and for all of us working towards an Orphan Drug Policy in Canada, the below thesis is an excellent source of information… mcfadyena
Hunter Syndrome 10 Jan 2012 Never Gets Old Just before his third birthday, after six monthes of fighting with the BC government, Trey became the first person in Canada to be approved for Elaprase, a life-saving IV Enzyme… mcfadyena
Hunter Syndrome 22 Dec 2011 Carpal Tunnel Release booked & Osteopath appointment After spending a lot of time speaking with Trey's plastic surgeon, Dr. Verchere, and a hand surgeon at the University of Minnesota, Dr. Van Heest, who is an expert in… mcfadyena
Hunter Syndrome 19 Dec 2011 An update in honour of my grandma My eighty-six year old grandma, Omi, got her first ever computer and a wireless internet connection about a month ago, so she coud read Trey's blog (she lives a five… mcfadyena
Hunter Syndrome 14 Dec 2011 Online Auction to Benefit MPS II Research Our second online auction is up! It will be live from Dec. 14-23 and will benefit the MPS II Research Fund (to read more about the fund and how it… mcfadyena
Hunter Syndrome 13 Dec 2011 2nd IT Elaprase dose complete Trey's second IT Elaprase dose, of 30mg, is complete. He received it this afternoon via lumbar puncture under general anesthetic. Long story as short as possible, a doctor accesses Trey's… mcfadyena
Hunter Syndrome 28 Nov 2011 Shire BRAVE Awards Recipients Announced Shire honors 14 caregivers through inaugural international recognition program DUBLIN, Nov. 18, 2011 /PRNewswire/ -- Fourteen caregivers from around the world have been announced today as Recipients or Distinguished Honorees in the… mcfadyena
Hunter Syndrome 23 Nov 2011 $100,000 MPS II Research Fund RFA Issued This past year we have raised enough money, for the first time ever, to issue a $100,000 MPS II research grant. The application deadline is February 29, 2012 and the… mcfadyena
