We are deeply sorry to share the news of the death a lovely and long-standing MDS UK member: Mr Anthony Woodburn (Tony), who had joined the MDS UK community in June 2013.
Anthony passed away at home on the 10th September 2018.
Tony had been a staunch supporter of our work, attending many group meetings, helping us to campaign, regularly checking on the progress of our little charity, providing advice, offering support – and being an extremely generous donor as well.
He was diagnosed aged 65, in 2008, with the low-risk MDS del 5q. Sadly, after about 5 years, in 2013, his haemoglobin started to drop and he embarked on a trial for a drug that was not yet available on the NHS.
Happily, he responded very well to the drug – and his contribution did not stop here.
Post-trial, the drug went through the NICE process and was initially rejected, which prompted MDS UK to renew efforts to campaign for its recommendation on the NHS.
Tony helped us, by writing about his experience, strengthening our submission and request to NICE to review their decision.
Fortunately, this work paid off, and the drug is now fully available in the UK.
The help that Tony provided is far reaching – from agreeing to take part in a trial, understanding what kind of work was required, sharing his experience, spreading awareness of the condition, following news of NHS and Department of Health activities, to supporting us financially when he could. Over the years, he donated an amazingly generous £12,000 towards our work.
Tony had a unique way of donating funds to us. As an antique dealer specialising in rare and precious clocks, he used to send us a very generous donation of £1000 each time he sold a particularly rare clock.
Strangely enough, the passion for horology was shared by our chairman, Ted Peel, as well as our scientific advisor Dr Dominic Culligan – who discovered their shared interests at one of our MDS patient meetings – and were delighted to discuss watches and clocks together. Personally, I will miss the conversations we had at King’s College Hospital, the ongoing research in MDS, the necessary advocacy work, his genuine care and concern about the work we are able to do for patients, the future and well-being of the organisation.
As a growing organisation, we were actually thinking of inviting Anthony to join our committee – so I am also sorry to miss out on the benefit of his wisdom and kind support.
He was a lovely, caring, quiet man, and left a huge impression on people he met.
The King’s College Hospital Haematology team, as well as his local haematology team in Brighton all expressed their deep sadness, and send their sincere condolences to the family.
Our thoughts are with Sonja, his wife, his children Jessica and Tim and grand-children Honor, Lila, Thea, Amelie and Maggie.
Sophie, CEO, MDS UK
I was so sad to hear of the death of Anthony, particularly since I had just drafted a letter to him thanking him for his tremendous support for MDS UK over a prolonged period and asking him if he would consider becoming a Trustee or Patron of the Charity. Without the generosity of Anthony and other benefactors like him, none of our work would be possible.
Ted, Chairman, MDS UK
According to Tony’s wishes, the family has asked for donations to MDS UK or Bloodwise, instead of flowers – and set up page for tributes, donations and messages :
Please visit a previous entry on our website about Tony, dating from 2016 – with a link to his website and beautifully restored antique clocks and barometers.