Steve Benge

Jen's 100 Miles in June

Fundraising for NSPKU
raised of £500 target
by 19 supporters
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Verified by JustGiving

RCN 273670
We exist to help & support people with PKU to promote care & treatment of PKU


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Phenylketonuria (PKU) is a very rare metabolic disorder. People with PKU cannot break down the amino acid phenylalanine, which then builds up in the blood and brain. Untreated, this can lead to brain damage.

My daughter, Zara, was 8 days old when we received a phone call telling us she had PKU and this had been picked up on her newborn heel prick test. We had never heard of the disorder and were in complete shock. 16 months later my son, Ted, was born and we knew there was a 25% chance he would also have PKU; it was confirmed a few days later that he did.

Currently, the only available treatment for PKU is an extremely restricted, low-protein diet that completely avoids high-protein foods (such as meat, eggs and dairy products) and controls the intake of many other foods, such as potatoes and cereals.

The NSPKU are an incredible charity who support people with PKU and their families through education & research as well as creating a caring community and campaigning for better treatment.

27th June 2021 is PKU Day and the NSPKU have asked their members to do a physical activity for 100 minutes, 100 miles or 100 times. I have chosen to walk 100 miles in June to help raise money and awareness.

About the charity


Verified by JustGiving

RCN 273670
Exists to help & support people with PKU, their families & carers. It works closely with medical professionals in the UK. It receives no government funding & is dependent on the generosity of its members & the public to fund practical support, raising awareness & research into the condition.

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