Trust Secretary Richard Price gratefully accepts cheque for £10,751 from Beth Betty, with funds already in and a little more expected in soon, the total amount for the events will be over £11,000.  This is a fantastic achievement and will provide much needed funds for Histiocytosis research.

Richard would like to thank Beth and all the team for their hard work to raise the money and for the kind hospitality he received on Sat. 4th Oct when he arrived at the club.


Ian Gough at the Cricket Club Fun Day
Welsh international rugby star Ian Gough arrived at the Pontnewynydd Cricket club, near Pontypool in  Wales on Saturday 24th August  to support the Charity Fun Day organised by Beth and Mike to raise funds for Histiocytosis research.  The day featured, amongst other events and stalls, a 5k fun run, live bands, and a highly competitive Tug-o-War competition. 

We are pleased and excited to announce that the trustees have, in accordance with the recommendation of our Scientific Review Board, chosen to award the 2008 Jon Pritchard Award for Histiocytosis Research to the project submitted by the Centre for Immunodeficiency in the Molecular Immunology Unit of University College London Institute of Child Health in the UK. 

The project, entitled "Development of Gene Therapy for HLH due to perforin deficiency" aims to investigate gene therapy as a treatment for one of the more severe and aggressive of the Histiocytoses known as "Haemophagocytic Lymphohistiocytosis", or HLH.   With HLH, the problem lies with cells of the immune system which are not able to kill viruses properly. This can cause the immune system to ‘go haywire’ when it encounters a virus and this leads to major problems in many parts of the body including the liver, spleen, bone marrow and in the clotting of the blood.  Often the brain is also involved.  There are a number of gene defects that lead to HLH including a gene called perforin which accounts for a large number of HLH cases. In this project (which will be funded by Histiocytosis Research Trust) the team plan to use gene therapy to re-introduce the perforin gene into cells from patients to see if their normal immune function can be restored.

The internet auction site eBay have a service especially for charities called MissionFish that allows eBay users to donate the proceeds of ebay sales to the Trust.  We also have a wide selection of goods for sale that were donated to us for our own eBay shop. 

Click HERE to visit our shop or contact julie@hrtrust.org or for more details on donating some of your own sales proceeds to the trust.

 

Preliminary results of the BPSU / Newcastle University LCH Epidemiological Survey in UK & Ireland (funded by the HRTrust) are available HERE. (as presented by Jane Salotti to the 2006 Histiocyte Society meeting in Argentina.

13 July 1993 – 9 September 2006

"Our beloved Daniel, son to John & Helen, and brother to Elaine, Paul & Amanda, passed away this year after a long struggle with Epstein-Barr related Haemophagocytic Lymphohistiocytosis. He fought hard and we are proud of him, and we miss him every day."

Our featured appeal is in memory of 13 year old Daniel Connacher who lost his fight to HLH in September 2006.  We particularly welcome visitors from the Rod Stewart Cronicle who may know his mum, Helen.  Please click HERE to donate for Daniel via our online donation account at CharityChoice, or HERE to find out more about him at his memorial website.