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Tim Raven avatar
Tim Raven

Brighton Marathon 2019

Running (or more likely walking) a marathon for N.S.P.K.U. because of Amber and other PKU families

111 %
£2,224.20
raised of £2,000 target
by 73 supporters
Donate
  • Event: Brighton Marathon 2019, 14 Apr 2019

N.S.P.K.U.

We exist to help & support people with PKU. to promote the care & treatment of PKU's.

Charity Registration No. 273670

Story

Thanks for taking the time to visit my JustGiving page.

Amber was diagnosed with Phenylketonuria (PKU) through the heel prick test when she was born. It is a rare metabolic condition that means her body is unable to properly breakdown phenylalanine (Phe), one of the amino acids that make up protein. If she eats foods containing protein this will build up in her body acting as a neurotoxin and cause brain damage. As there is no cure it is currently managed through a highly restricted diet (estimated that 85-90% of foods are eliminated) which means meal planning and specialist foods are essential. She also has to take supplements several times a day and have a weekly blood test to monitor her Phe levels. There isn't much support available for the condition because it is rare (about 1 in 10,000) and so the NSPKU is a really important charity for us. It provides advice and information for parents and people with PKU producing literature, giving updates on new low protein food products and creating a platform where we can share thoughts and advice. It is also increasingly active in lobbying parliament to raise the profile of PKU and highlight the drugs that are available in other countries which increase tolerance. Finally, where they have the funds they support genetic research. 

I would therefore love to be able to raise some funds for the charity and any donations however small would be really appreciated. If you want to find out any further information about them I give the site address below which you should be able to just copy and paste into your browser. Even if you just take the time to visit the site it will be raising the profile of what is still a relatively unknown condition despite it being part of newborn screenings since the 1960's.

Thank you so much for any support you can give.

http://www.nspku.org/

Donating through JustGiving is simple, fast enough and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

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