mcfadyena

The best news on the block this week is that the IRB hold on enrolling new patients into the MPS II Intrathecal Trial has been lifted. And this is an…

I had a conference call yesterday with Dr. Stockler and her wonderful resident Dr. Clara Van Karenebeek to get results from the shwack of tests Trey recently had. Trey's ultrasound…

Well, I don't really know what to say. The UNC Institutional Review Board has put the trial on hold. Kids who currently have implanted devices and are receiving drug, will continue,…

Ry's mum passed away yesterday, so we are filled with grief. I'm not going to go into more because it's Ry's mum and not my place. However, I got home…

The above photo is of Trey & Nicklas Harkins (MPS I) at the MPS Cup a couple weeks ago. It's not the best photo of Nicklas, but Trey was so…

For the second year in a row, our friend Grizz Salzl put on a charity poker tournament at the Edgewater Casino, to raise funds for our MPS II Research Fund.…

Those of you who know what's going on will know why our trip has been re-scheduled. It's a long story and one that I don't feel like getting into at…

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…

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…

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…