Hunter Syndrome 23 Apr 2018 Construction Cares was a HUGE Success! Construction Cares, an indoor fair for adults & children of all ages with net proceeds going to the MPS II… mcfadyena
Hunter Syndrome 05 Mar 2018 Construction Cares is Coming Up!! Naikoon Contracting Ltd. has stepped up to support our MPS II Research Fund in the most incredible way. Last year,… mcfadyena
Hunter Syndrome 20 Dec 2017 Spoke with Dr. Muenzer Regarding IT Trial Set-back I spoke with Dr. Muenzer today regarding the IT Idursufase trial not meeting it's endpoints. If you have any questions regarding the future of the trial, please feel free to… mcfadyena
Hunter Syndrome 19 Dec 2017 IT Idursulfase Trial Faces Setback Please read: https://endpts.com/shire-hit-by-a-setback-as-hunter-syndrome-drug-fails-late-stage-study/ https://www.shire.com/en/newsroom/2017/december/wvdwq3 I'm not going to say a lot right now as I'm still processing this news and I'm not sure how much I can/should/want to be posting… mcfadyena
Hunter Syndrome 18 Oct 2017 Construction Cares: an Interactive Activity Filled Event for Children and Adults of All Ages! We have an exciting announcement! Earlier this year, the company who built our house, Naikoon Contracting, approached me to put on a fundraiser for our MPS II Research Fund. With… mcfadyena
Hunter Syndrome 25 Jun 2017 Run Results, Our Documentary, and a New Event to Come!! It is big times for MPS II Hunter Syndrome! Trey ran in his third Scotiabank 5K today, surrounded by close family and friends. I often go into these events making… mcfadyena
Hunter Syndrome 09 May 2017 Imagine Trey Free from Hunter Syndrome I have to "go there" a bit in order to write this blog. But I don't want to and I'm not diving in. Human clinical trials for gene therapy in… mcfadyena
Hunter Syndrome 17 Feb 2017 Rare Disease Day- February 28 There are so many "Day's." Anti-bullying Awareness Day, World Thinking Day, Earth Day, World Cancer Day... google it and you'll find days you didn't even know existed! Rare Disease Day… mcfadyena
Hunter Syndrome 14 Feb 2017 D-Day Short but sweet. Y'all might love this given my usual essay style blogs. ;-) Trey was diagnosed 11-years ago today. I was scared of moms like me when Trey was… mcfadyena
Hunter Syndrome 06 Feb 2017 West Van High!! In the past few months I’ve started a number of blogs that got interrupted by life, so I’ll give you a shortened version here, followed by information about our yearly… mcfadyena
