Every year on the 28th of June, the PKU community joins together to celebrate International PKU Day. It’s one of the most talked about days in the PKU community calendar, and a time where families, patients, charities and companies join together to raise awareness of Phenylketonuria.
A brief chat with different people in the PKU community will show you that International PKU Day means different things to many of us. Personally, I feel International PKU Day serves its biggest purpose to PKU families by acting as an annual encouragement to raise awareness of Phenylketonuria. Many people within the community take part in fund raising activities, share their very own personal PKU stories (all packed with emotion) and broadcast the existence of PKU to the world. This year, following on from the formation of an All Party Parliamentary Group for PKU, the NSPKU has brought several British MPs on board to do the diet for one day on 28 June. As a community we need to shout, and we need to shout loud. Our international day is an opportunity to do exactly that!
PKU is such a rare disorder, so its huge to make ourselves known to the rest of the world, not only to help raise funds for research, but also to help in a political struggle for PKU treatments to become available in the UK (which are already available elsewhere in Europe).
Remembrance to Robert Guthrie and Horst Bickel
International PKU Day also serves as a remembrance to two men who were born on 28th June. Robert Guthrie, born 28th June 1916, developed the first newborn screening test, and Horst Bickel, Born 28th June 1918, was the first to develop a low protein diet for PKU infants in 1951.
Without these amazing findings from Robert Guthrie and Horst Bickel, those with PKU would almost certainly by subject to mental retardation, with untreated newborn babies being dangerously affected by protein in foods and milk.
Anybody born with PKU genuinely owes their quality of life to Guthrie and Bickel, and their mutual birthday is certainly a fitting occasion to celebrate PKU as a successful, life changing discovery which the whole community is indescribably thankful for.
A Reason to Celebrate
With the raising awareness and remembrance of the two men who discovered a successful low protein diet for PKU, we really feel that International PKU Day gives us something to celebrate.
Some members of our tight-knit community might be celebrating by running a half marathon to raise money for PKU, others might bungee jump off a bridge or do a skydive, but getting together to enjoy the company of other people who also share the same day to day challenges is golden to those who live the PKU lifestyle.
There has never been a better time to get involved in raising awareness of PKU. Start a fundraising campaign in your community, talk to your local press, share your PKU story with the NSPKU or ask your friends, family and local MP to join the NSPKU’s Diet for a Day Challenge.
What does International PKU Day mean to you, and how are you going to get involved? Let us know in the comments!