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Understanding Mutations to Treat MDS

The most dramatic development in MDS research over the past few years has been the identification of the gene mutations that cause MDS. These mutations are not inherited, but are acquired in blood stem cells during the lifespan of a person.

Benjamin Ebert is researching these mutations. A major focus of his research is to determine how this genetic information can be used to improve the diagnosis of MDS, and to find the best therapy for each MDS patient.

Lenalidomide, for instance, is a powerful treatment for MDS patients with deletions of Chromosome 5q, a specific genetic mutation.

In the future the research could predict response to azacitidine and decitabine, only available in trials in Europe, and it might help to find out who is best suited for a transplant.

Some of these findings are only preliminary, and Ebert and his team are working to study larger groups of patients to make definitive predictions.

Not a cure but a lot of progress - all of the time, thanks to national and international researchers, and many clinical trials.

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Take Part In This Survey And Help To Create Better Tools For Patients

Thanks to the latest improvements in cancer treatment many more cancer patients are now able to live with their condition.

As a chronic illness, cancer requires long-term watch, maintenance and treatment and patients and their families need to manage their own care.

The iManageCancer project is creating intelligent, fun new ways to allow patients to manage their lives from their mobile phones.

Now they are asking for your help.

This month, they have launched a survey aimed at healthcare professionals, patients and the general public to find out what they'd like to see if they used a personal health record online.

The survey is available to take by clicking here

Everyone can take part, and the more, the better; whether you are comfortable with technology, or not so much.

The results will help to create better tools to help people with cancer, so please to share this with everyone you know!



ASDA Public vote and donation scheme

September 2014ASDA-web003
We are pleased to announce that we have received the runners-up prize in the ASDA donation scheme – in the ASDA store of the Old Kent Road. This is the local store to King’s College Hospital.
We thank staff member Claire Gager, Community Life Champion for delivering the cheque for £50 to our offices.
All ASDA stores run this same scheme – and we encourage all our patients and family members to request their local ASDA stores to enter MDS UK as one of their charities. It is the same token system as Waitrose.
In this scheme, 3 charities can enter each month. Winners receive £200 and runners up £50 each.
Thank you to ASDA and all their customers for their votes.


As part of the Community Matters project, each month every Waitrose branch donates £1,000 between three local good causes that their customers choose.

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John Lewis

John Lewis Partnership has kindly contributed towards the costs of our annual London Patient Forum – via their local Victoria office.

Their Community Liaison Co-ordinator in Victoria explained their fantastic policy about assisting local small charities:

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Mishcon de Reya

Founded in 1937, Mishcon de Reya is a law firm with offices in London and New York offering both individuals and companies a range of legal services encompassing: corporate; employment; dispute resolution; family; private client; and real estate.

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Foster Denovo

A recent very generous donation to MDS UK has come from the Foster Denovo – a national firm providing financial advice to individuals, families, corporate clients and charities.

The firm has kindly offered us to use their board room for our MDS UK committee meetings to continue planning and developing our services. We always try to save costs where is practicable, in order to dedicate most of our funds for pure patient support.

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The most recent assistance to MDS UK came from a wonderful group of people supporting Alexia Hudson, whose mother Edel O’Meara is an MDS patient. The total amount of money raised was a magnificent £520. Sega Europe very kindly donated an iPad mini as a raffle item, and a great group of bakers supplied items for a bake sale.

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MDS UK Patient Support Group Newsletter – August 2015

Our sixth edition of the MDS UK Newsletter is now out.
Click the image to download.

MDS UK Patient Support Group Newsletter – June 2014

Our fifth edition of the MDS UK Newsletter is now out.
Click the image to download.

Free donations by shopping