David and Allison Hartley from Romsey, Hampshire, UK established the XLP Research Trust after their four sons were diagnosed with XLP in 2003. The ‘Hartley Boys’ story can be found in full, including up-to-date news, at their web site:

www.teamhartley.co.uk

In the London based Institute of Child Health Research Report 2004, there was a comprehensive feature on XLP and the Hartley boys. This suggested that a gene therapy cure would be possible in the next few years if funding was available—this brought about the birth of the XLP Research Trust. You can download a PDF file of the report here:

Download: The Silent Killer

The Hartleys are under no illusion that a gene therapy treatment will be of any help to their four sons who are currently going through the long process of bone marrow transplantation. Their hope is however that no one else should walk the dark valley that XLP casts in the future – by that a safe genetic cure will be available. Currently only around 3 out of 10 boys with XLP can find a suitable bone marrow donor and we know from first hand experience that such a transplant is a very difficult procedure to go through.

The positive response from so many different people and organizations has at time been over whelming and in truth quite humbling. We have had folks run marathons, undertake triathlons, post valentine messages, buy teddy bears, perform concerts, take church collections, sell plants, hold gala balls, shake collection tins - all to help raise funds for the charity. We have also been very blessed by the support we have had from businesses some making us their ‘charity of the year’ and successful applications to some trust funds.

As a result of this wonderful fundraising; in the autumn of 2006 the charity ran its first appeal for medical research proposals. We received applications from three different continents and many research centres from across the world and in the summer of 2007 made our first awards to research centres in Australia, France and the USA.

In February 2007 the charity launched a ‘mini site’ called the XLP Family Forum to allow family and close relatives to share experiences and questions about how others have been affected by XLP. This is a safe forum specifically to help put other affected by XLP in-touch with other families from across the globe. Registration is free for all XLP families.

Please join with us to win the battle with XLP, so that in the near future we will have that all important gene therapy treatment and moreover, that it will be available worldwide.

The XLP Research Trust is a member of the Genetic Interest Group (www.gig.org.uk)  and the Fundraising Standards Board (www.frsb.org.uk).