Today is National Phenylketonuria (PKU) Awareness Day!
The United States Senate only very recently voted to designate December 3rd as PKU Awareness Day, in 2012.
So let’s take a moment to learn more about this rare inherited metabolic disorder and what we can do bring some much needed awareness.
What is Phenylketonuria?
PKU is a rare genetic condition that causes a buildup of the amino acid phenylalanine. Amino acids are obtained through the dietary intake of protein, and phenylalanine is present in protein as well as some artificial sweeteners. The buildup of phenylalanine in the body can lead to serious health problems.
Symptoms of PKU are caused by a lack of breakdown and elimination of the amino acid phenylalanine. Newborns with PKU do not exhibit symptoms immediately after birth. Symptoms appear within the first few months of life, which include:
- Seizures
- Developmental and Intellectual delays
- Hyperactivity
- Decreased bone strength
- Abnormally small head (microcephaly)
- Fair skin and eyes due to poor melanin production
- Skin rashes such as eczema
- Musty odor to breath, skin and/or urine
- Heart defects
To read more about PKU, click here!
The National PKU Alliance
The National PKU Alliance’s (NPKUA) mission is to improve the lives of individuals with PKU and pursue a cure. The NPKUA provides information and support to adults and families, advocates for the reimbursement of medical foods and invests in targeted and peer reviewed research for the development of new therapies and a future cure for PKU.
Let’s look at some opportunities to raise awareness on this day, courtesy of NPKUA!
Online Store
Visit the National PKU Alliance’s online store to purchase awareness swag, like t-shirts, bracelets, and window decals.
Not only are you helping support a worthy cause, but you help raise its profile!
Fundraising
Like to fundraise? Love fun events like bake sales, trivia nights, walk-a-thons, and more?
Click here to learn how you can organize and execute a fundraiser to help donate money for PKU efforts. Every bit counts!
Handy Dandy Fact Sheet
Click here to access a one-sheet flyer, which has a neat set of facts and tidbits that can easily be distributed to anyone curious about PKU.
The more people learn about it, the better!
Social Media Advocacy
Sometimes, adjusting your social media to include awareness language and messaging can make an impact!
Look below to see which of the social networking tools best fits your talents and try a lend a hand for awareness:
- 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.
Even the smallest of efforts can make a difference in spreading the word about PKU – and rare diseases in general!
