Rory Morrison Dies. Rory Morrison, the well-loved BBC Radio 4 newsreader and presenter sadly died on the 11th June 2013 at the tragically early age of 48. He leaves his wife Nikki and two children. Rory hosted the 2012 London Forum in his truly inimitable style, but his earlier Autologous Transplant failed only weeks after and his WM also later transformed. His only reasonable option was for an Allogeneic Transplant from his brother, which he had earlier this year, but after being discharged home was readmitted to UCLH on the 6th June and died of complications. Rory was a member of our Patient Advisory Panel and charmed all he met. He was a very special person and we shall greatly miss him. Here is a photograph of him charming the audience at the 2012 International Forum. We are considering a lasting tribute to Rory, possibly in the form of a WM patient registry which will be invaluable to researchers and increase the uptake of trials in the UK. The BBC have been busy raising funds for us by baking cakes-£1,700 so far. For details click here
WMUK Newsletter No 2 July 2013 Now available 12th July 2013
Click here to download PDF
Newsletter No 1 February 2013
Click to download WMUK newsletter no 1 PDF
DR SHIRLEY D'SA'S SUMMARY OF THE WM WORKSHOP IN NEWPORT,USA 5th Nov 2012
The summary of the Physicians workshop gets to the heart of current treatment options, and the contents will inevitably form the core of most of the discussions in the March London Forum. Required reading!
Dr Shirley D'Sa's summary of WM Workshop Newport
TRIAL SHOWS RITUXIMAB SUPERIOR TO WATCH AND WAIT 1st May 2012
Results of a trial at UCLH on follicular lymphoma- which often uses similar treatments, shows Rituximab is superior in terms of disease progression to 'watch and wait' in asymptomatic cases. May have implications for WM treatment. This is an article in the UCLH Wardlines magazine.
NEW CLINICAL PAPER ON HYPERVISCOSITY IN WM 6th January 2012
This clinical Paper is by Dr Shirley D'Sa of WMUK. Shirley is lead WM specialist at University College Hospital, London. This paper is very useful reading for anyone who has Hyperviscosity caused by IgM. It was intially written for The Torch, the IWMF Magazine, January 2012 and thus contains some USA terms and units.
NEW GENETIC LINK TO 90% OF WM CASES FOUND 18th December 2011
Dr Steve Treon of the Dana-Farber Institute at Harvard revealed his research which linked 90% of WM cases to a single genetic defect in his presentation at the annual American Socirty of Haematology conference at San Diego in December. Steve will be talking further about this as keynote speaker to the 3rd International WM Patient Conference in London. There is more information on the IWMF and Dana-Farber Sites. This is a copy of the press release from Dana-Farber: WM_gene_treon_Dec2011
THREE INTERESTING DANA FARBER ARTICLES ON WM TREATMENT 18th December 2011
These three articles from the Dana-Farber Institute, including one from Steve Treon are technical, but very comprehensive state of the art views of WM and its treatment.
Well worth the read! Beware of differences in units in the USA, particularly IgM.
ONLINE INTERNATIONAL COMMUNITY THRIVING 10th June 2013
Phil Manning, of transplant blog fame, has volunteered via WMUK to be the English Language moderator of the WM online community established by EURORDIS, the European Rare disease organisaton. Not only does it provide a platform for English language discussion, it offers translation into 5 European languages, so linking the existing WM communities in other languages. Have a look at the Rareconnect site at:
Get in touch now- you will welcomed, and keep Phil busy!
See also EURORDIS, the voice of patients with rare diseases for details of other rare disease news. www.eurordis.org
4th International WM Forum, London, March Pictures NEW 2nd April 2013
150 patients, doctors and carers attended the 4th Forum in London at the Royal College of GPs. Here are a selection of photos. The 2 disc DVD of all presentations is available, plus some still photos. Just send £15 (£18 overseas) via the donate button and send us a confirmatory email and we will do the rest.
The packed lecture theatre
The popular 'Patient Tales' wall
Ask the Doctor
'Ask the Doctor Lite' -One to one' speed dating'
Rare Disease UK Stall
Dr Bob Kyle's Keynote Address Dr Monique Minnema from theNetherlands
DR Bob Kyle speaks to the EWMn European Conference Meeting