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:
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. We made further awards in 2010 and are in the process of making our next awards now.
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
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 hosted similar forums in 2012 and 2014 and are already planning our forum for 2016.
Please join with us to win the battle with XLP, with your help we can do it.