MAPKUF, Inc. First Annual 5k for PKU

3 color 5k no background

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 funds for research to help better the lives of those affected by this rare disorder and ultimately find a cure. […]

My PKU Life: Traveling to Other Countries to Advocate for PKU and Newborn Screening

Kevin Alexander, a photojournalist, produced a documentary called “My PKU Life.”

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 it. The Sao Paulo metro area is about 3,000 square miles with a population of around 20 million. It’s the […]

Life Changes: Phenylketonuria (PKU) Survivor Shares Loss of “Mama” Essential to PKU Diagnosis and Care

Kevin Alexander, PKU Survivor

I don’t know when it happened. Maybe it was when I got my first “real” job and the stability that comes with traditional employment. Maybe it was when I graduated college and looked forward to taking a few years off of school before I would […]

Landon Can’t Process Methonine, Which is Found in Protein; Special Diet Controls Homocystinuria

Landon has Homocystinuria, a rare genetic metabolic disease that does not allow his body to process the amino acid, Methonine.

My name is Rachel, and my son Landon has Homocystinuria, a rare genetic metabolic disease in which he can not process the amino acid, Methonine. which is found in protein. This disease can cause developmental delays, stroke, seizures, heart attack, blood clots, several physical deformities […]

In Defense of Newborn Screening – Your Tax Dollars Saved My Life!

Kevin Alexander is PKU (Phenylketonuria) Survivor

A Social Justice Issue OK, I’m just going to be real with you. I’ve tried to sit down and write this particular entry numerous times… But every time instead of clicking “Publish” when I’m finished I clicked “Delete” instead. It just wouldn’t come out right. […]

PKU: What is Normal?

Kevin Alexander is PKU (Phenylketonuria) Survivor

If you’ve read my blog these last few weeks you know it’s been a crazy time in my world recently. But things seem to be returning to normal. I say “normal”, but what is “normal”? I mean, some things are fixed and certain. The sky […]

Control is an Illusion: PKU

Thankful for Life Guest Blogger: Kevin Alexander, MA This morning on my way to work I was almost in a very bad car accident. I was driving in the left lane on the interstate when a car veered into my lane. They obviously didn’t see […]