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Maxx Cook: enjoying life

1.8 from 5 votes
Monday, May 11, 2009

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Clinical Trials

Maxx Cook was a pretty popular guy his senior year.

He was captain and quarterback of the Lone Tree Lions football team, he was homecoming king, and a star representative for a drug company.

Cook said the highlight of his senior year was winning their home football game against the school's local rival, Highland. Second on his list was the experience of getting to eat a steak with his friends at prom.

"It wasn't the first time I'd ever had steak," said Cook. "But it was the first time that I was around all my friends and out eating what they were eating and not having something ordered special for me. Just being able to blend in."

Born with PKU (Phenylketonuria), a rare genetic disorder, Cook was selected to participate in a study performed by the drug company BioMarin for their drug KUVAN.

Cook said his doctor at the University of Iowa, Judy Miller, referred him for the study.

"She heard about this company that was trying a drug that could lower 'Phe' levels," said Cook. "I was a good candidate because I had always kept my levels between four and seven and this would help me keep my levels low."

When testing a new product, companies keep their eyes open for people who respond to the drug.

"I was a responder," said Cook.

Staying in control

Cook has had to regulate his diet since he was a child. He eats only certain kinds of fruits and vegetables and starches and drinks a special synthetic protein shake.

His parents, Mark and Glenda, played a major role in helping him do that.

"Since the time I started grade school, till about the middle of middle school, they packed a lunch for me every day," said Cook. "They packed a lunch so that they knew I would have something to eat every day. If we were going on a field trip, they'd pack me something that they knew I could eat. On family vacations they had to pack special food for me to eat and my formula."

As Cook got older it became a little more difficult.

"It is sometimes difficult when I'm out with my friends," said Cook. "But my girlfriend is really understanding of it and before this drug we would go to a place where the group knew that I could eat. They changed their ways so I could eat."

Cook is careful to point out that KUVAN isn't FDA approved to change the diet of someone with PKU.

"I kept my diet the same, which was a low protein diet, and the levels were staying between a two and a three, maybe sometimes a 1.5 range," said Cook.

After talking with his doctor again, Cook agreed to attempt an increase in the amount of protein he consumed.

"They said I could really eat whatever I felt comfortable with," said Cook. "KUVAN is not approved to liberalize the diet for PKU patents, but is approved for lowering the Phe levels, which it has done, but in turn it has also increased my abilities to eat higher protein foods."

Recently, Cook, who is a member of the Lone Tree boys golf team, missed a few golf meets for a trip to Denver, Colorado, where he spoke at a BioMarin conference. His positive reaction to KUVAN has made him a great spokesperson for the company.

After graduating from high school this spring, Maxx Cook plans to attend St. Ambrose University in Davenport and study Criminal Justice.

©The Lone Tree Reporter 2009

Author: By Tim Groff
Source: Z Wire
1.8 from 5 votes
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