Story
About PKU
Phenylketonuria (PKU) is a rare inherited condition in which there is a buildup of phenylalanine in the body. Phenylalanine is a natural substance; it is a building block of protein. PKU is looked for in all newborns in the United Kingdom by measuring phenylalanine levels in the heel-prick blood test. All babies should have this test as it allows treatment to start early in life.
PKU is a treatable condition. Phenylalanine is found in the protein part of the food we eat. The treatment is a low protein diet. This means that high protein foods such as meat, cheese, poultry, eggs and milk are not permitted. Instead the diet is supplemented with artificial protein which contains no phenylalanine. This diet is very effective at lowering levels of phenylalanine and allows normal growth and development of the child.
About the charity
The NSPKU exists to help and support people with PKU, their families and carers. It works closely with medical professionals in the UK. It receives no government funding and is dependent on the generosity of its members and the public to fund practical support, raising awareness and, research into the condition. It publishes a wide range of booklets and leaflets (including food lists) for parents, PKUs and medical professionals. Events - it organises conferences and study days. It also sponsors medical research into PKU. It is run by the Council of Management who are all unpaid volunteers with PKU in their families.
For every £125 I raise, this will contribute to the testing of one item of food for phenylalanine. The old tests were accurate to +/- 10% now they are much more precise. If I reach my target, that would be the equivalent of testing 8 food items. Now just imagine how many products are on the supermarket shelves...
This weekend I am running the Liverpool Marathon to raise funds for the charity. I have gone from couch potato to marathon runner in 15 months; ambitious or mad?! Caused some injury to my shins but sought help and now hopefully my legs are on the mend and ready for Sunday. In 2011 alone, I have ran a total of 104 times, totaling 541 miles, burning 55,499 calories!
My target was £1,000 and I’m £250 short of that target. So please dig deep and donate now.
Thanks for reading.
Jennifer
You can also donate by text: Text ACKR80 £1 to 70070 or any other amount