USMD-PKU.org
colLaboratively working with organizations and individuals supporting all iem disorders!
To tell you a little bit about PKU, and what the families and those with PKU face as a daily and lifelong challenge, please read this letter from Zack Ogle...
"Hello there, my name is Zack Ogle.
I wanted to let you know a little bit about myself as I know you are being sent some information regarding an upcoming fundraiser. I was born with a rare genetic disorder, phenylketonuria (PKU). The short version of what PKU means is that my body is unable to use one of the essential amino acids found in protein. The buildup of phenylalanine (phe) in the blood causes serious brain damage including mental retardation as well as seizures. If untreated it can also lead to complete muscle breakdown and can leave one disabled.
The good news is that PKU is treatable with a low protein diet for life. This means no meat, dairy, eggs or soy can be in my diet. Wheat products are also very limited. I must also drink a formula to maintain proper growth. Because I am able to eat very little “real world” food, I must eat a lot of special low protein foods so I won't stay hungry all the time. These foods are extremely expensive and must be special ordered. My formula is also very expensive. It costs approximately $280 every nine days to buy my formula.
If you haven't met me, you might think I'm small and frail because of this disorder. Wrong! My mom has always taught me to be very strict about my diet so I'm completely healthy and strong. I've always played sports – I love baseball and am on the freshman tennis team at Memorial High.
So, here's the most important part of this note to you….about 3 years ago, my mom and a couple of other moms formed a non-profit group now called Unified to Support Metabolic Disorders (“USMD”). The main purpose of this group is to make people aware of PKU and other related disorders and to raise money for research. I can tell you, it's not easy to live with PKU. It's been hard all my life going to outings where other kids didn't understand why I couldn't have hamburgers, pizza, ice cream or other things kids normally eat. I'm thankful my family has been able to provide low protein foods for me but others are not so lucky. Because this disorder is so rare, we are a very small population and need your help in continuing to raise money to find a cure for PKU. Last year, with the help of local individuals and organizations, we were able to raise over $15,000 which was donated towards PKU research. I hope you will help us again this year.
Thank you for taking the time to read this. I hope to see you at the PKU Walk for Awareness on April 26th !"
-Zack