9:49am Saturday 6th September 2008
ROMSEY'S big XLP Research Trust triathlon has been postponed until next Spring - but that did not prevent the family who launched the Trust looking back with pride on their successes so far when they celebrated its third anniversary.
The Hartley family founded the trust in a bid to find a cure for the potentially lethal condition known as X-linked Lymphoproliferative Syndrome (XLP) which brothers Joshua, Nathan, Daniel were diagnosed with almost five years ago.
At present, the only cure is a bone marrow transplant - all four have now had successful transplants - and the aim of the Trust is to fund research to find a cure.
The boys' dad, David Hartley, said: "In the three years we have been running the XLP Research Trust we have been genuinely amazed at the level of support we have received both from friends and from so many folks that we don't know personally know.
"We have been seriously blessed by the response of so many and the support has lifted us as we have battled through four successful bone marrow transplants for our own wonderful sons.
"Last year, we commissioned three important pieces of research into XLP which will increase globally the knowledge about this rare but life-taking condition.We also started the process of providing some user friendly' literature about the condition (it can be downloaded from the Literature' section of the charity's website) and a key priority for the next year is to find funding to allow us to translate some of the website and this literature into other languages.
"We are also starting to explore hosting the world's first symposium' on XLP - bringing together key researchers and clinicians into the same place to share knowledge."
The XLP triathlon, which was due to have been held on September 28, is now set to take place next year - probably April.
Support is still being sought from teams, sponsors and individuals who could help in managing the build-up and the day.
A video report on the first triathlon now be found on YouTube.
Meanwhile, the family is pushing ahead with its fund-raising activities and Mr Hartley said: "Why not join us on Sunday October 12 when as a family we will be Walking The Test Way' both to celebrate having four sons come through successful bone marrow transplants and to raise funds to support the work of the charity."
Walkers can sign up at www.walkthetestway.co.uk.
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