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

Each of the Hartley boys has now gone through a successful bone marrow transplant and are at different stages of recovering from this difficult procedure.  The vision of the Hartley’s for the charity is that in the near future that no other family has to walk through the dark valley that XLP casts – that safe treatments will be available to any XLP affected boy. Currently only around 7 out of 10 boys with XLP can find a suitable bone marrow donor and the mortality risks from a bone marrow transplant can be very high.

Since the launch of the charity, 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, throw themselves out of plans (with a parachute), 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 a number of generous 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. At the time of writing this we are in the middle of our second round of granting medical research awards.

In 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 and has been well received and used by XLP families. We also started a process in 2008 of writing ‘family friendly’ leaflets about different aspects of XLP to help ensure that affected families have the very best advice. These also have been well received.

In 2009 we started the process of having professional translations made of key web pages and information leaflets to help us reach out to families where English is not their language. The flags at the top of this page will direct you to the 12 mini sites we now have.

February 2010 was a historic month for the charity as we hosted the world’s first Symposium on XLP. This brought medical researchers together from across the globe to share the very latest research studies about different aspects of the condition. We intend to host these key events every two years and so are already planning for 2012.

Please join with us to win the battle with XLP, with your help we can do it.

Sincerely

David

November 2010

Download: The XLP Research Trust list of Trustees

The XLP Research Trust is a member of the USA based Genetic Alliance (www.geneticalliance.org), the Genetic Alliance UK (www.geneticalliance.org.uk) and the Fundraising Standards Board (www.frsb.org.uk).