Hunter Syndrome 28 Apr 2011 Exciting Gala updates!! Updates are coming so quick around here, there's not time to post about all the exciting stuff going on! Tickets for our Gala are officially for sale. We have so… mcfadyena
Hunter Syndrome 28 Mar 2011 Once Upon a Cure, a Gala for Hunter Syndrome Research 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… mcfadyena
Hunter Syndrome 28 Mar 2011 Heading back to North Carolina After a long wait, we have been asked to come back for final qualifying tests for the IT trial at UNC. We will be going back for the week of… mcfadyena
Hunter Syndrome 18 Mar 2011 Dr. Lloyd-Evans Grant Funded!! We have funded a $50,000 research grant to Dr. Emyr Lloyd-Evans at the University of Cardiff. Below is a summary of the research he is conducting: "We are aiming to… mcfadyena
Hunter Syndrome 07 Feb 2011 Five grant application received!! Last Monday, January 31 was the deadline for applications for our $50,000 MPS II Research grant. Since the beginning of our fund in 2007, we've never received more than 2… mcfadyena
Hunter Syndrome 18 Jan 2011 Raising awareness around the world Or at least around North America. The below link leads to an article about a family who has become very very close to me. Jen, Tripp, Aidan and Avery Carter.… mcfadyena
Hunter Syndrome 13 Jan 2011 IQ qualified Trey's IQ qualified him to move into further qualifying assessments for the IT trial, that puts a concentrated form of the enzyme his body is missing, directly into the brain.… mcfadyena
Hunter Syndrome 11 Jan 2011 Sleep? Not in North Carolina. No matter now hard I try to relax, and no matter how calm I am or think I am going into one of these trips, when I am here, I… mcfadyena
Hunter Syndrome 10 Jan 2011 Distraction My family and friends who are close enough to know the day to day goings on in my life often hassle me for taking on too much. Today made me… mcfadyena
Hunter Syndrome 16 Dec 2010 A flight with Santa Yesterday was an AMAZING day. Since Trey was diagnosed, we've participated in many events for the BC Children's Hospital Foundation: Miracle Weekends, radio and television interviews, the Festival of Lights,… mcfadyena
