MDS UK Patient Support Group Newsletter – March 2020

Read all about:

Patient's Stories - Living with MDS:

•  Andy Veitch, Kevin Dwyer, Graham Cheyne, Stephen Rhodes
•  Patients' Poems - by Chris Davis, Kes Grant, Kate D and Shareen Vouvray.

Editor's Note: The poem "Heavy Luggage" was written by Shareen Vouvray. We do apologise for wrongly attributing it to Chris Davis on our Newsletter.

Research and more:

•  MDS UK supports its first scientific research project
• Car-T Therapy Research
• Clinical Trials
• Online, one to one video consultations
• Clinical Team Stories

Campaigning and Fundraising Successes:

• Prudential Ride London 100, MDS World Awareness Day, Rebecca Bennett Art Exhibition and Greeting Cards, The Cabbage Patch 10 and much more!

In Memoriam:

• Guy Rouquette, Bev Nye

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Patient's Stories - Living with MDS:

• Bergit Kuhle: B12 meets MDS; Michael Bower; Bernard E Burke; Shareen Rouvray - Part 1; John and Sandra; Poetry by Kate

Research - Progress in the diagnosis and treatment of MDS:

• European MDS Registry, Prof David Bowen; Familial/inherited MDS: rare but important to keep in mind, Professors Jude Fitzgibbon, Tom Vulliamy, Inderjeet Dokal Queen Mary University of London; A Feasibility Randomized Trial of Red Cell Transfusion Thresholds in Myelodysplasia, Professor Simon Stanworth; Online Consultations with an MDS expert, Prof David Bowen; Data – a patient’s new best friend, Dr Thomas Coats

Fundraising Successes:

• London Marathon 2019; Turks Head 10k fun run; and a lot more!

Here to help:

• How support groups and technology can assist in communication, Dr Pavel Peter Kotoucek, FRCPath Haematology Department, Broomfield Hospital, Chelmsford; Making the most of your consultation; A a very successful Patient Information Forum in Harrogate; Regional groups update and more

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Patient's Stories: Kes Grant ‘Coping with long stays in hospitals...’; Andrew Scott Married to MDSDS; Tilly Tilbrook ‘How I felt about losing my hair...’; Christina Fowler ‘Decisions, decisions...’
Research: Prof D Wiseman Chronic Myelomonocytic Leukaemia (CMML), Prof D Steensma, Measuring quality of life; Prof T Chevassut The effects of vitamin C, Raqeebah Agberemi, Impact of myelodysplastic syndrome and its treatment on quality of life of patients
Advocacy: Radio Day on MDS Awareness Day: Make Blood Cancer Visible Campaign
Fundraising: Prudential RideLondon-Surrey 100, Cabbage Patch Race
From MDS UK Board: Sophie Wintrich, Welcome Notes; Edward Peel LL.B (Hons) Chair MDS UK Growing and achieving

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Patient's Stories: Reginald Hall, Reverend Kes Grant and Bergit Kuhle.
MDS Research: Azacitidine Latest News, Personalised Medicine and EPO Treatments.
Advocacy, Fundraising, Local News and much more.

Read all about:
MDS UK new Patron Caitlin Limmer AKA “The Force of the Limmer” and “Force of the Limmer”, the Race Director of Twickenham’s famous Cabbage Patch 10 Race and The Turks Head 10k.
A campaign that was worth it: NHS England will fund 2nd stem cell transplants for patients whose blood cancer relapses.
New developments in MDS Treatment, Advice on Travel and Insurance and much more.
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