We established the XLP Research Trust after our four sons were diagnosed with XLP1 in 2003.
In the London based Institute of Child Health Research Report 2004, there was a comprehensive feature on XLP and our sons '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 Silent Killer.
Each of our sons has now gone through a successful bone marrow transplant (or stem cell transplant) and are doing well. You can read an update on our family story here. Our vision 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 XLP1 and XLP2/XIAP 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 planes (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 in 2016 funded critical research into XLP2/XIAP.
In 2008 we started a process of writing ‘family friendly’ leaflets about different aspects of XLP to help ensure that affected families have the very best advice which you can find on this web site and 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 first 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 and clinicians together from across the globe to share the very latest research studies about different aspects of the two conditions. We hosted similar great symposiums in 2012, 2014 and 2016 and 2018 and in October 2020.we went 'virtual'. We had planned a symposium in 2022 but it became clear that the impact of the C19 pandemic on medical research is now coming through with a reduced number of papers being submitted, we hope to restart these important meetings in 2024. Details on all these symposiums can be found on this site.
Today we are on the cusp of some great medical breakthroughs for XLP1 with gene therapy very close and imminent. Research into XLP2/XIAP is however in its infancy and overall we still have much to learn.
If you are a family affected by XLP then we know what a hard time you must be going through. If it would be helpful to talk, please do get in touch.
Please join with us to win the battle with XLP, with your help we can do it.
Sincerely,
November 2023
