Happy PKU Awareness Month!

May 1, 2010 at 10:03 PM 4 comments

This first day of May is the official PKU Awareness Day!

I hope everyone out there showed their support by wearing blue and participating in community gatherings, etc if they were able! And if not, no need to fret because…

ALL MAY IS NATIONAL PKU AWARENESS MONTH!


I challenge all of you to do one thing this month to help raise awareness from PKU.

  • Some of you may not love talking about PKU and answering endless questions about what you can and cannot eat. I challenge you this month to talk people up! Answer their questions and be open to teach interested audiences about your life day-to-day
  • Go to your favorite restaurant and ask them to prepare you a dish with your low-PHE foods
  • Participate in a local road race and fund raise money for PKU research

  • Give a presentation at school or work about PKU, bring in your favorite snacks, treats or meals and have extras for them to taste
  • Reach out to another PKUer! Go to PKU.com and join a community of PKU patients and family members to talk everything PKU related from diet to relationships to just genuine support, or search facebook for all of the PKU support network groups or pages, follow @pkuandhealthy2 @patientpower @pkuawareness on twitter and many others to stay updated!
  • Share with us here what you plan on doing this month!

  • Check out your local organization and see if something is taking place this month (go to www.npkua.org if you are unsure of your local organization!)
  • Check out NPKUA for updated PKU Awareness month evens here
  • Buy your friends, family or… self a Support PKU Research wristband here, PKU Awareness T-Shirt here, or a PKU Awareness ribbon for your car (add your name to Christopher Howell’s ordering list for car magnet ribbos here)
  • Support PKUIronMike as he raises funds for his chosen charity NPKUA follow him on his blog here
  • Join us all in contacting our legislators for support by the end of the summer for the Medical Foods Equity Act. How? Use NPKUA’s tips and suggestions here
  • I could go on and on… share with us all what YOU did this month…

I am going to post a fun PKU fact every day during PKU month! check back here and you may learn something you didn’t know! Enjoy the month! Don’t worry, I will also finish up the PKUPyramid ending on the exercise piece and look forward to beginning a healthy weight loss challenge while not compromising PHE levels… hope you stay tuned!

May 1, 2010: Fun PKU PHEnomenal Fact of the Day!

“What was not known could be known.” These were the words of Asbjörn Fölling who discovered PKU after Pearl S. Buck, mother of two children, about which she wrote the book The Child Who Never Grew desperately sought his medical advice. Read more about Asbjörn Fölling, the discoverer of PKU here.

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Entry filed under: Uncategorized.

Freshening Up! May 2 PHEnomenal PKU Fact of the Day!

4 Comments Add your own

  • 1. Kristi  |  May 2, 2010 at 5:58 PM

    This is great! I love the ideas on here. I love to answer questions about my PKU–I am a nurse and we work with newborns so do the Genetic Disease Screen (also known as “The PKU” to the nurses who have been around for a while). They are intrigued to hear about someone who actually is a “poster child” for what we do.

    I know a lot of people are scared of sharing with friends/acquaintances about our PKU lifestyle/diet. I would also like to challenge my peers to talk about PKU–what if the person you are talking with today has a child, grandchild, niece, nephew, or even friend that is diagnosed with PKU? I would love for people to not have to freak out with a PKU diagnosis like my parents did.

    We are having a PKU Picnic here in town–the first PKU event in Tucson for a few years. As of right now, we are working on building a support system and educating eachother from within. Maybe next year we can educate others in a more formal way.

    On another note…I was introduced to Pearl S. Buck in High School Honors English and when I learned about her book, The Child Who Never Grew, I was touched. How fortunate we are to live today when we have screening, formula, a selection of low pro foods, and the internet for support! I thank God for that.

    Reply
    • 2. pkuandhealthytoo  |  May 2, 2010 at 9:05 PM

      Kristi- You and I have a lot in common : ) I too (as you know) work in the field and I personally LOVE talking up my fellow RD’s about all of their (NUMEROUS) questions! I eat it up : ) Your challenge is right on the money. I know the people that know me have spoken up in classes or conversations about PKU that randomly pop up and they can say, “Oh I know someone with that, and she’s fine!.” Great idea, Kristie. That is great about the picnic! Keep us updated on how it goes! And I would love to read Pearl S. Buck’s book, but I have not yet. I think that might be what I end up doing as my challenge for the month! Happy PKU Month!

      Reply
  • 3. hannah  |  April 11, 2011 at 11:37 AM

    Ive recently met a child with pku and she has inspired me to try to raise money for her family so that they can afford to buy her food the food is really expensive its like 32 dollars for a package of 6 gluten and protien free pizza puffs so the family needs the money plus they have to order the food from canada

    Reply
  • 4. hannah  |  April 11, 2011 at 11:38 AM

    thank you

    Reply

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