PKU Awareness Year-Round

The NPKUA is committed to building a national awareness. We encourage local organizations, volunteers, and donors to come together to coordinate walks, runs, golf tournaments, picnics and camps to spread PKU awareness and raise funds for research because these events benefit you personally.  

It is these types of local events that have funded the academic research that has led to the commercial development of more treatment options for PKU – including Kuvan, PEG-PAL and GMP.  These advancements exist because adults and families came together on the local level to fund the work so these innovations could be picked up by industry leaders.

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This year Rare Disease Day will take place on Monday, February 29th. The theme is 'Patient Voice', recognizing the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and caregivers.This


How can you get involved in raising awareness?

  • Post on the NPKUA Facebook page or other social media outlets using the Rare Disease Day logo or #. 
  • Donate or can become a member of the NPKUA or a rare disease organization. 
  • Share your personal story on blogs and forums like on the AdultswithPKU.org website. 
  • Plan ahead and host an event in your community and get your local media involved.
  • Attend a State House Event. Click here for a listing of planned events.

For more ideas visit www.rarediseaseday.us.

What you can do to spread PKU awareness:

WEAR YOUR PKU AWARENESS

  • Order a National PKU Awareness t-shirt, bracelet or window cling here.

FUNDRAISING AND HOSTING AN EVENT

  • Community Eventclick here to learn more about holding events to support PKU.
  • Using Mobile Tools -The NPKUA has a service through Mobile Cause which allows us to set-up fundraising pages to aid in any fundraising event providing links to be copied into emails or posted on social media. It also has a feature that allows your friends, family and others to access the donation page via their mobile phone by texting a keyword to a designated number. The NPKUA receives all online collected funds directly from Mobile Cause and donations collected offline can be added to the fundraiser by mailing them to the NPKUA. Click here to see an example of a current fundraiser. Please contact Michelle Pernsteiner, Event and Development Assistant, for more information via email or (414)704-7521 .  

BE AN ADVOCATE FOR PEOPLE WITH PKU

  • There are many federal and state issues that affect people with PKU. You can help get our collective voice heard by contacting your elected representatives. Check out our "Take Action" advocacy page to read about the issues and learn how you can help.

SPREAD AWARENESS ON SOCIAL MEDIA

  • Facebook -NationalPKUAlliance
    Post a status or photo that spreads awareness about daily living with PKU.
  • Twitter -@NPKUA_Info
    Tweet about living with PKU. Use the hashtag #PKUAwareness in your tweets.
  • YouTube- NationalPKUAlliance
    Watch and share the touching and informational video from the Tuxes for Tia gala. Copy and paste the following link http://www.youtube.com/watch?v=y6B1-r1nq2Q into your personal website, blog, or even on your Facebook wall/Twitter feed.

SPREAD THE WORD LOCALLY

  • Write an article or letter to the editor for your local paper, contact a local radio station or TV news station to set up an interview, distribute the PKU awareness flyer at work, school, and local businesses or make a presentation for your child's school/class.

PRINT PKU AWARENESS STICKERS

Resources

PKU Awareness Flyer
Download and print the awareness flyer to distribute/display at work, school, and at local businesses.

PKU Facts for Kids
PKU Facts for School Faculty and Staff
Download and print these fact sheets to bring to your child's school for a presentation on PKU.

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