Tag: Phenylketonuria

A total of 17 posts are filed under Phenylketonuria
PKU: Can’t Take Away My Life, My Family, or my Hope
I am 51 years old and I have phenylketonuria. My disease is also known as “PKU” for short.  Phenylketonuria (PKU) is a rare condition… Continue Reading
PKU Life: The Plight of the Advocate
It’s hard to believe the holiday season is already upon us. For some people, it’s a very difficult time of year, but for others it’s… Continue Reading
PKU Life: “What the Heck is Phenylketonuria?”
Hello there! Here we are, at the beginning of a new journey. This is the first of what I hope to be many articles documenting my personal… Continue Reading
2014 National PKU Conference to Take Place in Salt Lake City, July 10-13
PKU (Phenylketonuria) is a rare, inherited metabolic disorder that is characterized by the inability of the body to utilize the essential… Continue Reading
Exclusivity: How The Government Keeps Orphan Drugs in Production
Why did the FDA grant BioMarin this permission, known in bureaucratic lingo as a “six-month pediatric exclusivity extension?” BioMarin… Continue Reading
MAPKUF, Inc. First Annual 5k for PKU
The Maryland Alliance of PKU Families will be holding its First Annual 5k run on Saturday, March 22, 2014 to raise awareness of PKU and… Continue Reading
My PKU Life: Traveling to Other Countries to Advocate for PKU and Newborn Screening
Sao Paulo, Brazil is massive. I looked out over the city a few days ago just before my plane landed. And honestly, massive barely describes… Continue Reading