P.K.U. Matter Society's NORD 7,000 Mile Rare Movement

My name is Angie and I have PKU, I am also Mrs. Kansas Plus America 2018. This February, me and my team are joining NORD’s Rare Movement Campaign to raise awareness for rare diseases. Together, participants aim to move a total of 7,000 miles of donor-supported movement by Rare Disease Day on February 28th. There are 7,000 known rare diseases, 95% of them have no treatment. Help NORD continue to support the 30 million Americans affected by rare diseases through patient assistance and support programs, research grants, advocacy and educational initiatives.

This will be the first time we will be using the name P.K.U. Matters Society. We are hoping to turn this name into charity for PKU and rare disease families in the Kansas City Metro area. While the PKU part is a homage to my own rare disease it is also an acronym for People Knowing Uniqueness, making the name People Knowing Uniqueness Matters Society.

What is PKU?

Phenylketonuria is a rare genetic disease or condition in which the patient has difficulty breaking down phenylalanine (Phe), an amino acid found in all natural protein. PKU affects approximately 350 babies born each year in the U.S. alone. That number increases phenomenally if you include PKU births worldwide .

Food impacts blood Phe levels.

The reason people with PKU can’t break down Phe is that they have a problem with an enzyme called phenylalanine hydroxylase (PAH). PAH breaks down Phe into another amino acid called tyrosine.

Since Phe is found in many foods, such as chicken, meat, eggs, dairy, nuts, grains, and legumes, people with PKU typically eat a special diet.

PKU requires lifelong management.

It’s very important to start PKU management early and continue managing PKU for life. In the U.S., newborns are tested for PKU soon after birth as a part of the newborn screening program. PKU experts recommend beginning management as early as possible, starting management within the first week of life. This helps protect an infant’s developing brain from the damaging effects of high or unstable blood Phe levels.

We chose a mileage goal of 1,934 miles as our team’s goal to honor the year PKU was discovered by Dr. Asjørn Følling in Norway.

Please consider sponsoring us for this AWESOME campaign.

Update 1/29/2018 We started this campaign before the “Team” pages were up to create & join. Our team members are now creating their own campaign pages that filter in to our team totals. Collectively, we are attempting to reach 1,934 miles. I will be adjusting this page to reflect my personal goal. I am also excited & proud to announce my church’s Worship Leader Kirk & one of our Pastors Richard Castaneda will be joining our little team.

www.facebook.com/angieoutofthe...

www.royaltyenroute.blog

Meet Team PKU Matters: