MDS UK

Our Committee

DowningSt_PetitionRT2Prof Rodney Taylor
Chairman
Trustee & Director
(MDS Patient)

portrait 2 - fionaFiona Pirilla
Committee Secretary
Trustee & Director
(MDS Patient)


Jan Buchanan
Fundraising team
(MDS friend)

Profile photo
Zlatko Sisic
HTA Advisor
(AA Patient)

 Geke Ong-KCH Group
Geke Ong

Clinical Nurse Specialist

Russell Cook profile pictureRussell Cook
Deputy Chairman
Trustee & Director
(MDS Patient)

John TaylorcvsummaryProf John Taylor
Charity Commission Advisor
Trustee & Director
(MDS Patient)

Chris Dugmore photo
Chris Dugmore

Essex Group Facilitator
(MDS Patient)

DominicCulliganportraitDr Dominic Culligan
Consultant Haematologist
Scientific Newsletter Editor

 JanetHayden-KCH CNS
Janet Hayden

Clinical Nurse Specialist

sw portrait2Sophie Wintrich
Chief Executive
Trustee & Director
Patient Liaison

Don BarrettDon Barrett
Treasurer
Trustee & Director
(Chartered Accountant)

portrait-joanneJoanne Anderson
Fundraising Team
(MDS Patient)

Craig JacobsCraig Jacobs
Role tbc
(MDS Patient)

Phyllis Paterson-Addenbrooke's CNS
Phyllis Paterson

Clinical Nurse Specialist

Claudia RichardsClaudia Richards
Patient Coordinator

Kirsty Crozier-OxfordwebKirsty Crozier
Clinical Nurse Specialist

Shahnaz Hama picShahnaz Hama
Clinical Nurse Specialist


MDS UK Team

Research NewsVacant
Project Worker

profile picture

Peter
Volunteer


Patrons

Professor Ghulam Mufti

Lord Tariq Ahmad

 



John BellingerJohn Bellinger 1950 – 2015

Very sadly, our friend and Committee Member John Bellinger died on 28th December 2015, due to a severe pneumonia infection.
John had been a MDS UK Committee Member since January 2013, shortly after being diagnosed with MDS.  Soon after, he opted to have a stem cell transplant, which he finally recovered from in early 2015.  Despite a difficult recovery process, he always maintained close contact to MDS UK staff, during his many visits to King’s College Hospital, as well as to committee members.

Throughout 2015 he had been of exceptional support to the charity – both in person and with a very generous donation.  The committee was looking forward to working with him further in 2016 – as his wise advice, energy, enthusiasm and wonderful humour were always immensely appreciated by all.

John was the model of an uncomplaining, thoughtful and reflective man, full of wisdom.
He was always determined to fight the disease and help others to do the same.
We will miss him immensely.

A further lovely aspect of John was the fact he had purchased a wood near Sissinghurst, Kent to encourage birds and wildlife in his countryside.  This had been an ambition for many years and a topic he often enjoyed discussing.
He was a lifelong member of Westcombe park Rugby Club as well as being Chairman for 9 years.
Finally, he was proud of his work as an insurance broker with Price Forbes.

Instead of flowers, the family request that a donation be made to the charity MDS UK Patient Support Group.
Please find a link below where you can donate online, and leave a personal message.
Alternatively cheques made out to ‘MDS UK Patient Support Group’ can be posted to:
Dean Wilson Funeral Director – 379 Well Hall Rd, London SE9 6TY

uk.virginmoneygiving.com/SomeoneSpecial/John_Bellinger

John’s funeral took place on the 21st January near his home in Kent.

We would like to thank Price Forbes and Partners and CEO Michael Donegan for their very generous donation in memory of their colleague John, and for the very kind words regarding our work and the support we offer MDS patients.

Thank you also to all other very generous donors who have contributed to John’s memorial fund via the Virgin Money Giving link.
There are too many to mention by name – but please be assured your donation is thoroughly appreciated and will help ensure we are able to continue our work assisting current and future MDS patients and their families in all of the UK.


April 2014 – 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.