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Cystic Fibrosis Worth A Minute Of Your TimeDid you know that 1 in 3 of the Cystic Fibrosis sufferers on the transplant list die waiting? A transplant can make the world of difference to those with CF. Please join the donor register.

Here is a story shared by the Cystic Fibrosis Trust.

“My life is so much better now I’ve had my transplant; thanks to research funded by the Cystic Fibrosis Trust I got my call. I hope everyone who needs new lungs gets their chance!”

Philippa, one of the first people to receive a transplant in the EVLP pilot.

It has been almost two years since Philippa received her double lung transplant.

During her time on the transplant waiting list, Philippa’s condition got worse. She had to put her university studies on hold, and began to spend more and more time in hospital. Her lung function reached as low as 17%, and she became confined to a wheelchair. At night she had to use a ventilator to help her breathe.

When the Newcastle Transplant team asked Philippa if she wanted to take part in a pilot trial for the Ex-Vivo Lung Perfusion (EVLP) technique, she jumped at the chance. EVLP involves using a modified dialysis machine, so that lungs that may not have been suitable for transplant are now fit for use.

Today Philippa’s life is completely changed. Her lung function is an astonishing 126%, she is hoping to continue her study, and is planning to marry her fiancé in May next year, on the eve of the third anniversary of her transplant.

By increasing the number of donor lungs available for transplant, EVLP could greatly reduce the number of people who die on the waiting list, and change how transplants are performed in the UK and beyond.

Thanks to the Cystic Fibrosis Trust, and the support of the Robert Luff Foundation, the Ex-Vivo Lung Perfusion technique is helping to save the lives of people with cystic fibrosis today.

It is vital that everyone who is suitable for a lung transplant receives one: currently one in three people with cystic fibrosis on the transplant waiting list dies before they can receive a donor lung; we need to improve this statistic.

You can help the CF Trust help people like Philippa by supporting my 2013 miles in 2013 challenge.

Cystic Fibrosis A Race We Must Win2013 Miles in 2013

This year I am trying to complete 2013 miles self-powered miles. My 2013 miles in 2013 challenge is in aid of the Cystic Fibrosis Trust as I have been surprised since I started fundraising for the CF Trust just how many people are unaware of this disease and so I hope my efforts will not just raise money, but also awareness of the UK’s most most common life-threatening inherited disease.

The first person to commit to sponsoring my 2013 mile challenge has committed to 1p per mile (£20.13 in total) and this got me thinking. I am hoping that as many as possible of those reading this will commit to do the same and the best thing is, if each person does this on a “pay as you go” type approach all you will need to part with is approx £2 just after each pay day. In January I completed 205.9 miles, in February I completed a further 200.9 miles, in March I completed 185.7 miles, in April I completed 192.1 miles and in May I completed 168 miles. If you can please spare £9.53 to help the Cystic Fibrosis Trust it will be greatly appreciated.

The easiest way to give your sponsorship is to visit my Just Giving page: http://www.justgiving.com/2012-AYearWithoutBeer-CF.

2013 Miles in 2013 – The rules

The rules for my 2013 miles in 2013 challenge are quite simple:

  1. All miles must be completely self powered (no motors, sails, etc)
  2. I must be able to evidence all miles, either via GPS or with a picture of any static gym equipment

To complete my 2013 miles I will be running, cycling, rowing and who knows, I might even try a few other self powered methods along the way.