mcfadyena

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…