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National PKU Awareness Day Events

December 3rd, 2012 was the first National PKU Awareness Day. On this day of recognition people around the country wore their PKU awareness t-shirts and stickers, held events, posted their PKU stories on Facebook, and much more in an effort to engage and educate others about PKU. 

We are pleased to share stories from members of our PKU community on how they came together to support and spread PKU awareness. Thank you to everyone who helped raise awareness on this day and continue to do so year round! Together we can make sure that our voices are heard!

Click here to purchase the PKU awareness t-shirts that are featured in many of the stories below!

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We have a three month old daughter that was diagnosed with PKU. We hadn't told a lot of people yet, but on Dec. 3, in honor of National PKU Awareness Day, we posted this picture on Facebook to share with our friends and family and to promote awareness for this rare disorder. 

Joe and Anna Lad

Nebraska

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Westmont Elementary School in Martinez, Georgia celebrated National PKU Awareness Day with a staff "Jeans Day."  Faculty and staff are not normally allowed to wear blue jeans to work, and about 25 of my coworkers paid $5 for a National PKU Awareness Day sticker and the perk of wearing jeans today.

Julie Cheek

Georgia PKU Connect

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In 2007 we had our first son, Sly. He has PKU. Click here to view the article in the Weatherford Daily News that was written as our contribution to PKU Awareness day!

Kasandra & Charley

Oklahoma

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Here is a picture from one of our families.  She had her son's school administration dept all wear blue in honor of National PKU Day!     

Melanie Colville MS, RD
Phoenix, Arizona

 

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In honor of PKU Awareness Day, I contacted a reporter from the Des Moines Register.  She wrote an article in the Metro section of the Sunday edition!  Click on the link below to read the article from the Des Moines Register:

 

Blythe Stanfel

Mom to Joshua 9 CPKU, Jonathan 7 CPKU, Gianna 2 non

Des Moines, IA

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My husband, Jason, and I went to our son, Zahary's, 3rd grade class and talked about PKU and what that means for Zach (8ys) and his sister, Madie (4yrs). My older two children (12 & 10 both non PKU) wore their PKU shirts to school to show support for Zach and Madie as well. 
 

I showed the class one of the blender bottles I use to mix his Phenex 2 in and our scale as well as a can of his Phenex 2. We talked about all the foods that contain protein and how Zach and Madie are not allowed to eat those and that they get all the good protein their bodies need from their Phenex 2. I also brought in a baggie with a serving (30g) of Cocoa Roos (Malt O Meal) with the PHE amount listed and then the same amount of Lp- Ringets Chocolate with the PHE amount to show the choice Zach has to make in the morning in how much cereal he gets if he chooses low or high PHE cereal. We also talked about choices in a restaurant when you can't choose the meats or pastas.

The kids were very receptive and had some great questions! One boy asked if they got "free" days where they could eat whatever they wanted. He was a bit sad when I said they were not. Another boy after hearing all the different foods that contains protein said "you just can't get away from protein can you?!"

We ended our time with the kids by letting them taste some of Zach's favorites. I brought in Aproten Fusilli noodles, Pumpkin Bread, Wheat starch Breadsticks, and Maddy's Yellow Cake mix made into mini cupcakes. They also sampled the Lp-Ringlets. It was a fun time and I am super proud of mu PKUer for sharing something about himself that he isn't always comfortable sharing!
 
Tracie Raitz
Mommy to: Bekah 12 non, Bobby 10 non, Zachary 8 CPKU, Madison 4 CPKU
Alma, MI 

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Our local paper, the Deseret News, did a front page story on our family to raise awareness for PKU.  Please use the link below to read the article.

http://www.deseretnews.com/article/865567932/Rare-genetic-disorder-leads-Holladay-family-to-healthy-eating-habits.html  

Amy Oliver
Mom to Seth & Claire, PKU
IPAD

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My name is Amy Taylor, and I live in WA State. My connection to PKU is my 2 year old daughter, McKinley Taylor. For National PKU Awareness Day, I baked some low-phe chocolate chip cookies on a stick, wrapped them in plastic wrap and tied little bows around them. I sent them to my daughter's daycare, for all the kids, daycare providers and my co-workers to try. I also printed out the PKU awareness stickers so that McKinley could pass out at daycare, as well as handing them out at my work. We also made buttons out of the stickers that McKinley's daycare providers, grandparents, my co-workers, and I wore. We purchased the National PKU Awareness t-shirts and wore those in support as well. 

 

Amy Taylor

Mom to McKinley, 2yrs

Washington

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Facebook Post for PKU Awareness Day

16 months ago I received a call from my doctor. There was something wrong with the baby boy I had just brought home from the hospital. The doctor told me he did not know what was wrong, but that I had to get to Children's Mercy Hospital in Kansas City immediately. I was terrified. I called Luis, my husband, and told him to come home from work immediately. We were panicking the whole three hours to the hospital. When we got there they ran tests and finally told us what was going on. Our son JJ had failed one of his newborn screenings. It was probable that he had PKU, a genetic disorder that prevents the body from breaking down a byproduct of protein called phenylalanine. My son is okay. He has to have blood draws regularly and is on a very restrictive diet, but to me he is perfect. I have learned to take one day at a time.

Amanda Martinez

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Nutricia employee's, including the CEO and VP of Marketing, wore PKU awareness t-shirts to the office in support of National PKU Awareness Day!

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We held a fundraiser at a local restaurant, Jim 'N Nicks, for National PKU Awareness Day. The restaurant is donating 10% of the total of all receipts submitted for the fundraiser.  

Amy Marvin

Mom to three boys, one with PKU

Birmingham, AL

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Below is what I forwarded to Texas Senators and Representatives on PKU Awareness Day.

 

Lori Kiely

Mom to Nathan Kiely

5 years old

 
 
 
 
 
 My name is Lori Kiely. I moved to Texas from Colorado last year. I am a single mother of a five year old son Nathan Kiely who has PKU. PKU is a rare inherited genetic metabolic disorder which does not allow the body to process an amino acid (phenylalanine) of protein. If left untreated, Nathan would be profoundly mentally retarded. The only way to prevent this is through a special diet low in phe (phenylalanine). So far, we have done very well with keeping Nathan healthy. He needs a synthetic protein of which he obtains through his formula. This is needed for life. His formula is $5,000 a month and his Kuvan, which helps regulate phe levels is around $5,000. Both are very expensive drugs. Nathan was accepted on Medicaid last October of 2011. I am an elementary teacher and when I landed a fourth grade position, they asked me to verify my wages. They took his transitional Medicaid away on October 2013. I applied for CHIP and am over the limit at $45,000 annually. I am facing paying $10,000 for one month of medication for him. If this is the case, I will have no choice but to quit and reapply for Medicaid. This doesn't make much sense to me. I am sending a plea for help. Today, December 3, 2012 is the first Annual PKU Awareness Day. It would be such a blessing if his medications were covered, and the only worry we would have is making sure we keep our children born with PKU healthy. Can you make a difference? Thank you for your time

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Please use the link to view a clip from Fox 2127 of a family promoting National PKU Awareness Day in Roanoke, Virginia!

  
http://www.fox2127.com/global/category.asp?c=209682&autoStart=true&topVideoCatNo=default&clipId=8024588#.ULz-1GuwD8w.facebook

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I sent an email to my mayor and he responded with a Proclamation of PKU Awareness Day in the City of Shreveport. So thankful to live in a supportive city!

Click here to view the proclamation.

Kevin Alexander

Shreveport, LA

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We had a great fundraiser for the NPKUA at Mooyah in North Richland Hills, TX. Brian Wells (President - Basewell Corporation) and Greg Doyle (General Manager - Mooyah NRH) and their staff were awesome. Thank you Mooyah! They were so accommodating and easy to work with. I really appreciated their support and I hope that we all continue to support their business year round.

Thank you to everyone who came out! Next year will be bigger and better!

Tami Bates

Mom to Tori 3 CPKU

North Richland Hills, TX

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My daughter Emily has cpku. I am a teacher so I printed out the stickers and the fact sheets and handed them out at my school. My principal was very supportive. She read the fact sheet over the loudspeaker during morning announcements. So many staff members and students approached me to find out more. My principal said she was also posting about it online and educating her friends. I was amazed and astonished. The genuine interest and support brought tears to my eyes. Everyone was wearing PKU stickers because of me. Everyone learned about PKU on this day because of my daughter. It was just a beautiful thing!

I also sent my daughter to school with a sticker and fact sheet for each of her teachers and the administration. I sent the book written by a mom of a son with PKU, "Everyone has Something" to school for the teacher to read to Em's Kindergarten class. The teacher not only read the book but she photocopied the sticker and had Emily bring it to each class and teacher. The book brought out such great conversation among the 5 year olds and now they all want to try Emily's cupcakes. So I'm making them for the class this week.

It was a very exciting day and I am so proud of the outcome. Everything I did was so out of my character, putting the spotlight on my life. I never would have done that for myself. I guess that's what the deep love for your child does to you. I set out on this day wanting to teach one more person about PKU and I did and then some. I can't wait until next December 3rd. I'm already thinking of what I can do then!

Christina Testut

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Dinner event for National PKU Awareness Day in Roanoke, VA!