MDS UK

Our Committee

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Prof Rodney Taylor
Chairman
(MDS Patient)

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Fiona Pirilla
Committee Secretary
(MDS Patient)

Don Barrett
Treasurer
(Chartered Accountant)

Geke Ong-KCH Group

Geke Ong
Clinical Nurse Specialist

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Russell Cook
Role tbc
(MDS Patient)

 

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Prof John Taylor
Deputy Chairman
(MDS Patient)

 

Jan Buchanan
Fundraising team
(MDS patient relative)

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Dr Dominic Culligan
Consultant Haematologist
Scientific Newsletter Editor

JanetHayden-KCH CNS

Janet Hayden
Clinical Nurse Specialist

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Zlatko Sisic
HTA Advisor
(AA Patient)

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Sophie Wintrich
Chief Executive
Patient Liaison

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Joanne Anderson
Fundraising Team
(MDS Patient)

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Chris Dugmore
Newsletter Editor
(MDS Patient)

Phyllis Paterson-Addenbrooke's CNS

Phyllis Paterson
Clinical Nurse Specialist

John Bellinger
Role tbc
(MDS Patient)

 


MDS UK Team

Monika Janosik - profile photo

Monika Janosik
Project Worker

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Peter
Volunteer


Patrons

Professor Ghulam Mufti

Lord Tariq Ahmad

Thank you to our treasurersSharon&Stephenphoto
After acting as treasurers for MDS UK for the last seven years, Sharon and Stephen Berger have now decided to step down from that role, and the MDS UK board of directors, mainly due to Sharon’s slow but steady recovery from her transplant. MDS UK would like to express their immense gratitude to both of them, for the time and energy they invested, dealing with all the accounting needs and financial regulations for our growing charity. Sharon had been a founding member of the initial 2007 MDS UK group, so we are especially grateful for her great input and contribution over the years. She has recently celebrated her one year post-transplant anniversary and Stephen has been very active volunteering as a courier with Anthony Nolan. We also congratulate them and their family for the amazing bone marrow donation campaign they conducted, trying to find a suitable stem cell donor for Sharon. We wish them both all the best – and especially a further steady recovery for Sharon. Thank you so much both!


David Hall 1930-2011

David Hall, chairman of the MDS UK Patient Support Group for three years, died on Thursday 6th October 2011 at the age of 81.  In the course of treatment for prostate cancer he had developed MDS.  David was vigorous in fighting both the effects of cancer, its gruelling treatment and his MDS for many years and was keen to help others in a similar position.  His early career was as a pilot in the Fleet Air Arm during the Korean War.  Subsequently he worked in electronics, fibre-optics, video processing and many high-technology areas, initially as a sales engineer, rising to sales manager and eventually managing director.  He was on the board of many companies.  He was a great believer in people and keen to help their professional and personal development.  He retired from this in 1986 but continued to be active in many fields.

In 2008 he had the honour of being appointed an Honorary Fellow of the Society of Cable Telecommunications Engineers in recognition of his contribution to that society.  He was described by a colleague as the “perfect English gentleman … always charming … elegantly dressed and free with his professional help and advice”.

One of his last wishes was to be driven in his immaculate, spotless Jaguar car to the coast to have oysters and champagne with his two sons – an ambition which he achieved with great pleasure.  We miss his wisdom, generosity and experience greatly.

David was the main driver behind the re-birth of the MDS UK Patient Support Group, following a chance encounter at the EORA international conference on Rare Anaemias in Paris in 2008, where he struck up a conversation with a representative from the pharmaceutical company Novartis Oncology (Elodie Miranda) and Sophie (in her then role of European Patient Liaison for the MDS Foundation).  The three of them quickly realised the need and opportunity to set up a formal nationwide support group for MDS in the UK.  Very soon after, another pharma company, Celgene was also offering assistance (via the very knowledgeable Karen Browne).  Several meetings later, the leaflet and a website were produced. This UK group followed the tried and tested model started by the MDS Foundation some 15 years ago.  The UK group still uses the MDS Foundation patient handbooks.  Their experience and assistance has been invaluable, as has that of both pharmaceutical companies Novartis Oncology and Celgene.  We thank them all hugely for their continued support.

The group would certainly not have been the same without David’s influence and constant encouragement to all involved.  We are planning to have a lecture named after him at the annual UK MDS Forum specialist conference, placing particular emphasis on the patient experience and quality of life issues.