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:
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.
In June 2008 the Chairman started a new 'blog' on MySpace. The purpose of this is to give an insight into the joys and pains of running a small charity. You can view this page here www.myspace.com
And we now have a special page on charity website MuchLoved where tributes in memory of loved ones may be made. It is an online place to remember a loved one, a place where tributes, life stories, memories and photographs may be posted. MuchLoved also has links to bereavement organisations and other places to go to for support as well as an online forum where you can share experiences and find help. To find out more please visit the MuchLoved.
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).
David Rodgerson
My name is David Rodgerson, I am 23 years old, and this is a brief introduction to my XLP story. For more information on XLP (also known as x-link...