My story

Thanks for taking the time to visit my JustGiving page. This page is the location to allow you to make contributions to my London Marathon 2011 run on behalf of the XLP Research Trust. I have a blog with a lot more personal information and my motivation for undertaking this effort here. Below you can find some information about XLP. A disease that afflicts children in their prime. Together we can start to fight back!

X-linked lymphoproliferative syndrome (XLP), which is also known as Duncan’s syndrome, is a rare always fatal disease that affects only boys. To date only about 100 families and 400+ boys have been diagnosed worldwide. It is likely, however, that there are many more cases where the correct diagnosis has not been made.

XLP can have many symptoms including: severe glandular fever, cancer of the blood (lymphoma) and inability to fight off infections and sometimes severe anaemia. 70% of individuals with XLP die by the age of 10 years without any treatment. The cause of the condition was only found in 1998 so there is still a lot to learn.

The best ‘prevention’ is regular top ups of anti-viral medicines, immunoglobulin therapy or steroids – but these are not a cure. Today the only possible cure is a bone marrow transplant – in effect replacing the faulty immune system.

Founded in 2005, the XLP Research Trust exists to:

1. Promote and fund research into the cause, management, symptoms and cure for XLP

2. Provide a point of contact and support for those families affected by XLP

3. Raise the awareness of XLP amongst the medical profession and the general public

Donating to the XLP Research Trust through JustGiving is simple, fast 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 and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more for the XLP Research Trust, whilst saving time and cutting costs for the charity.

So please dig deep and donate now. Childrens lives might depend on it!

My charity

XLP Research Trust

XLP Research Trust

Charity Registration No. 1111075

The XLP Research Trust promotes and funds medical research into a potential cure for XLP, a rare always life taking genetic disease that affects only boys. The charity also acts as a support hub for families affected by XLP worldwide and looks to raise the awareness of this awful disease.

Donations 102

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Good man Mark, great cause. Best of luck in the marathon.

Donation by Seamus Connolly on 09/11/10

£50.00

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Good Luck Mark, or should I say Forrest!

Donation by Sinead on 08/11/10

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Good luck to you Mark!!! and a special thought given to Davids family.

Donation by Catharina Svenningstorp on 08/11/10

£30.00

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I expect live facebook updates on progress during the event ;)

Donation by David Barkaway on 08/11/10

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Great cause Mark. All the best mate

Donation by Brian Kenny on 08/11/10

£50.00

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Great effort Mark! I'll support your training as well. All the best!

Donation by Bernard Doering on 08/11/10

£50.00

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Great work Mark.

Donation by Gregory Wood on 07/11/10

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No question you're running for the right reason - good luck!

Donation by Christoph Sporleder on 07/11/10

£50.00

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Great initiative Mark! We can make a difference if we help and take care of each other. Looking forward to your "progress reports".

Donation by Ann-Sofie & Jan Bergström on 07/11/10

£100.00

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Go Mark...pretent someone big & mean is chasing you!

Donation by Bill Marriott on 07/11/10

£25.00

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Best of luck to you Mark!

Donation by Vanessa Earl on 06/11/10

£30.00

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Great cause Mark! Glad to help you make it happen!

Donation by Michael Silva on 06/11/10

£50.00

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I'm glad that I could take part to this. You're a good person with big heart. Run well!

Donation by Petri Roine on 06/11/10

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Hey Mark. Nice initiative. Rare diseases need more research funding! Go beat those 4 hours.

Donation by Thomas Chrillesen on 06/11/10

£50.00

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By the time it is April you will be zooming through London, I am sure, Mark. Very good blog entry, great idea and very worthy cause. Good luck.

Donation by Frank Leistner on 06/11/10

£50.00

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good luck marky mark, hope you reach your target! :D

Donation by Karen O'Connor on 06/11/10

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Great cause! Awesome blog. Thrilled to support...as long as I don't have to run a marathon! ;-)

Donation by Nelle Schantz on 06/11/10

£50.00

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Good luck for your run! Rox

Donation by Roxanne Cannon on 06/11/10

£30.00

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Hope the training is going well and you reach your target. Best wishes for your own personal journey Mark xx

Donation by Portia Chandler on 05/11/10

£10.00

+ £2.82 Gift Aid

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Wishing you good luck for the run and the researchers good luck for finding a cure!

Donation by Diane Hatcher on 05/11/10

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Good luck Mark!

Donation by Chris Hemedinger on 05/11/10

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We will be cheering right along with your mom as you cross the finish line, Mark!

Donation by Cyndy Renfrow on 05/11/10

£30.00

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Thanks for giving me the opportunity to help out a little.

Donation by Alec Fernandez on 05/11/10

£50.00

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Mark, Nice to see the softer side of you. Hope you hit the 3K.

Donation by steve beatrous on 05/11/10

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Best of luck top man !!

Donation by damien fleming on 05/11/10

£50.00

+ £14.10 Gift Aid

Donation summary

  • * Online donations£4,502.42
  • Offline donations£0.00
  • Text donations£0.00
  • Total raised£4,502.42
  • Gift Aid£162.52

* Charities pay a small fee for our service. Find out how much it is and what we do for it.