Hunter Syndrome 28 Nov 2011 Shire BRAVE Awards Recipients Announced Shire honors 14 caregivers through inaugural international recognition program DUBLIN, Nov. 18, 2011 /PRNewswire/ -- Fourteen caregivers from around the world have been announced today as Recipients or Distinguished Honorees in the… mcfadyena
Hunter Syndrome 23 Nov 2011 $100,000 MPS II Research Fund RFA Issued This past year we have raised enough money, for the first time ever, to issue a $100,000 MPS II research grant. The application deadline is February 29, 2012 and the… mcfadyena 2 Comments
Hunter Syndrome 18 Nov 2011 December IT trip as planned Above is a picture of Avery reading to Trey and holding his hand while I was flushing and de-accessing Trey after his infusion today. Avery is growing up to be… mcfadyena 5 Comments
Hunter Syndrome 10 Nov 2011 Trey's November trip to UNC for IT dosing has been cancelled This is Trey moments after he lost his front tooth. :-) Two weeks ago tomorrow, Trey had emergency surgery to remove his infected intrathecal port. Yesterday the neurosurgeon who removed… mcfadyena 4 Comments
Hunter Syndrome 07 Nov 2011 Normal isn’t necessary I will begin by saying: the below blog is NOT mine. My friend Melissa wrote it, but it echoes my thoughts and sentiments and it is so well written, I… mcfadyena 2 Comments