Hunter Syndrome 02 Apr 2013 The Unspeakable Emily Rapp, mother to a child with Tay-Sachs (a Lysosomal Storage Disease like MPS II) and author of the New York Times article entitled 'Notes From a Dragon Mom' (click… mcfadyena
Hunter Syndrome 27 Mar 2013 MPS II Research Fund Update Dear MPS II Research Fund Supporters, It has been almost a year and a half since our last major fundraiser for the MPS II Research Fund. A year and a… mcfadyena
Hunter Syndrome 04 Mar 2013 IMPORTANT J&J UPDATE! Johnson & Johnson has stepped up!! This would not have happened without your voices. We were loud and clear and J&J finally listened. THANK YOU. THANK YOU. THANK YOU. Here… mcfadyena
Hunter Syndrome 01 Mar 2013 Do the Right Thing Johnson & Johnson! Johnson & Johnson began responding today to the hundreds of emails MPS families and supporters sent to them on Wednesday and Thursday. If you sent an email to J&J, you… mcfadyena
Hunter Syndrome 28 Feb 2013 I Will Fight For You This song is for Trey, for Jamie, Melissa, Andy and Ellen, for MPS parents, and for all parents who would do anything for their kids. [youtube] Our battle with Johnson… mcfadyena
Hunter Syndrome 23 Feb 2013 Johnson & Johnson's Damage Control On Wednesday, February 20, Johnson & Johnson (or more specifically, Janssen Pharmaceuticals, who is a company of Johnson & Johnson) told Andrew McFadyen of The Isaac Foundation that they would… mcfadyena
Hunter Syndrome 22 Feb 2013 Johnson & Johnson: Indifferent, Unethical, Immoral This is a picture of Ryan, Trey, and I moments after Trey’s birth. If you are a parent, you can probably remember and feel that moment, what it was like… mcfadyena
Hunter Syndrome 18 Feb 2013 Intrathecal Trial Update – Words on a Page It is quite strange to see the last few years of your life boiled down to a few paragraphs of text and a line on a chart. It is even… mcfadyena
Hunter Syndrome 13 Feb 2013 Seven Year Anniversary Trey was diagnosed seven years ago tomorrow, Valentine's Day. His 9th birthday is only two weeks later, on March 1 (he'll be at UNC on his birthday). These anniversaries, and… mcfadyena
Hunter Syndrome 23 Dec 2012 Holiday Thoughts This time of year always brings forth emotion. Mine has been brewing for a bit, but with only two sleeps away from Santa, it's now here. Our kids are SO… mcfadyena