Hunter Syndrome 31 Oct 2016 Gene Therapy: Donations and Dreams The Hunter Syndrome Research Coalition (the result of our MPS II family banding all our organizations together to fund research) recently donated $200,000 to support the next phase of Dr. McCarty and… mcfadyena
Hunter Syndrome 01 May 2016 Run time, Research Updates & Heart-Filling Messages Gosh, I don't blog a lot these days. There's a lot of reasons for that: 1. Trey is doing well, so my need to write with updates or for cathartic reasons… mcfadyena
Hunter Syndrome 29 Feb 2016 Million Dollar Meds I cannot tell you how many blog posts I have begun over the past 4 years and not published (well I can because I saved them, over 20). Everything I… mcfadyena
Hunter Syndrome 10 Jul 2015 Jared Leto Backs Project Alive I grew up watching My So Called Life with my sister, completely in love with Angela Chase (Claire Danes) and Jordan Catalano (Jared Leto). My sister wouldn't let a word… mcfadyena
Hunter Syndrome 10 Jun 2015 #WhenIGrowUp I want to be… Project Alive began from one photo. One teacher. A kindergarten teacher in Spring Hill, Tennessee, sent home photos with her children at the end of the school year. But little… mcfadyena
Hunter Syndrome 23 Feb 2015 Trey is Running in the Scotiabank 5K this year Just writing this title, my heart catches in my throat. It's a loaded statement, which is an understatement. Loaded because we were told from one doctor Trey would die by… mcfadyena
Hunter Syndrome 10 Dec 2014 Our Kids Change the World I read this quote and it's fitting: "Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see… mcfadyena
Hunter Syndrome 20 Nov 2014 More family!! The Higginson/Redmond's While we were at Disney World on Trey's Make-a-Wish trip, we missed The Isaac Foundation Gala on November 15. It is a really important event for us and we were sad… mcfadyena
Hunter Syndrome 18 Nov 2014 Trey's Make-a-Wish Trip We went on Trey’s Make-a-Wish trip to Disney World and stayed at Give Kids the World in Florida this past week. I found out a few days before we left… mcfadyena
Hunter Syndrome 13 Nov 2014 What is Gene Therapy? Over the past years we have funded a number of MPS II Gene Therapy Research projects, you can read about them here. We have also received a number of questions… mcfadyena
