Scientists Map Genetic Evolution Of Leukaemia Through MDS Patients

Here is a new article by the Washington University in St. Louis, School of Medicine:

This article deals with the need to develop cancer drugs that target specific gene mutations that develop in MDS.

Introduction: “By mapping the evolution of cancer cells in patients with myelodysplastic syndromes who later died of leukemia, Timothy Graubert, MD, and Matthew Walter, MD, from the Washington University in St. Louis, School of Medicine, have found clues to suggest that targeted cancer drugs should be aimed at mutations that develop early in the disease.”

Read the full article, published 14/03/2012,  here.

A selection of articles from the MDS Beacon highlighting results of recent MDS related research:

• Red Blood Cell-Stimulating Agents May Improve Survival In Higher-Risk MDS Patients Receiving Vidaza 22/03/2012
• Researchers Identify Genetic Mutation Associated With MDS Progression 20/03/2012
• Panobinostat and Vidaza Combination May Be Effective In Higher-Risk MDS Patients (ASH 2011) 6/02/2012
• Lower-Risk MDS Patients May Benefit From Early Stem Cell Transplantation Without T-Cells (ASH 2011) 26/012012
• Home Administration Of Vidaza May Be Feasible For MDS Patients (ASH 2011) 19/01/2012

Update: Response from the writer! (see below)

The BBC1 drama Hunted has featured MDS in one of their story lines – in the most recent episode Polyhedrus.

One of the side characters mentions she suffers from frequent nose bleeds and bruising – and explains it is due to a platelet disorder called MDS.

This is a very brief mention – but we are nevertheless glad to see MDS featured in a mainstream TV programme on a major channel – as it will raise some awareness of the condition.

We are trying to find out from story writer Frank Spotznitz or the BBC why they chose to feature MDS – and would like to congratulate them on having done so.  Do write into the BBC with any comments you may have as patients.

Frank Spotnitz has replied via his TV Blog:
84.At 20:03 14th Nov 2012, Frank Spotnitz wrote:  Thank you so much for all the thoughtful comments. They’re greatly appreciated. We featured MDS because it fit our storyline. I’d be delighted if the episode in some small way helps lead to a broader awareness of the condition.  Http://www.bbc.co.uk/blogs/tv/2012/10/hunted.shtml

 

We also wish BBC had perhaps offered support information after the programme – for anyone affected by MDS.

This is the link to the BBC I player – watch at 7:08 to 8:50 min into the episode:
http://www.bbc.co.uk/iplayer/episode/b01nvm50/Hunted_Polyhedrus/

Many thanks to our 2 patient members who called us to mention this programme.  They were quite surprised!

Please always do let us know if you spot any mention of MDS in the media – as we are not always aware of it.

Following the recent departure of our assistant Alice, MDS UK will be looking for a replacement as soon as possible.  We are looking for someone with strong data analysis skills to work on our patient survey project mainly – as well as to help out in the office with daily tasks.  Good experience dealing with social media tools and websites (preferably WordPress).  This is a varied, interesting and perhaps challenging role, which also does involve contact to patients and families.

We take this opportunity to thank Alice for the time she spent at MDS UK and work she completed and wish her the best in her new role managing data in another charity.

And apologies in advance for any delay in responding to queries and letters – with reduced personnel it will be difficult to answer as promptly as before – thank you for your understanding.  We will let you know as soon as we have found a replacement.

From Monday 15th to Friday 19th October, Channel 4 and Cancer Research UK will showcase TV programmes and fundraising events to raise money for cancer research for Stand Up To Cancer.

Throughout the week, Channel 4 will show documentaries and other programmes supporting those affected by cancer. The week will end with a live fundraising show, aiming to raise millions of pounds.

One of our youngest MDS patients, Daniel Taylor (10 years old) will feature as part of The Big C Choir – a group of cancer patients who have formed a choir, helped by another cancer charity Tenovus.

The choir will feature in a documentary shown on Channel 4 on the 15th October and will also sing live on Channel 4 on Friday 19th October as part of the final fundraising extravaganza.

It’s very impressive work and we encourage everyone to tune in to see Daniel and the rest of the Big C choir!

At this year’s London patient forum meeting, MDS UK committee member Chris Dugmore came up with an ingenious way to raise money at lunchtime for MDS UK, following the theme of marrows.

Chris introduced the competition by saying she had been thinking about how MDS patients have a poorly-functioning bone marrow and would love to have a healthy marrow.  So this was an opportunity for attendees at the patient forum to win one! Supplying one of the organic marrows she and her husband Stephen had lovingly grown in their allotment, green-fingered Chris raised an amazing £75.85 by asking for £1 donations from the generous forum attendees to Guess the Weight of The Marrow.

The lucky winner of the marrow was Fiona Pirilla (also an MDS UK Committee Member!) who came closest to guessing the correct weight of 4 lbs 5 1/4 oz (1,965 g) with a guess of 4.5 lbs.

Fiona took the marrow home and cooked it with pork, onions, tomatoes and cheese.
See below for pictures of Guess the Weight of the Marrow 2012 and the cooked marrow!

Left Chris Dugmore and Sophie Wintrich announce the marrow winner
Right Marrow growers Stephen and Chris Dugmore and Sophie present the marrow to winner Fiona Pirilla
Below The delicious stuffed marrow recipe

To see pictures and the agenda from the patient forum, please click here.

 

 

On Monday 24th September 2012 Kings College Hospital, in conjunction with Celgene UK and MDS UK, hosted the launch of the Life Beyond Limits photographic exhibition. The launch event was well attended by members of the MDS UK committee, press associations, and representatives from King’s College Hospital and Celgene UK.

Life Beyond Limits is a public health initiative which aims to raise awareness of MDS and improve the standards of treatment for older cancer patients. MDS UK is 1 of 8 advocacy groups in the international coalition of charities promoting the Life Beyond Limits campaign.

As part of the campaign, King’s College Hospital will host the exhibition of photographs entitled ‘Facing MDS: When Every Moment Counts’ until 05/09/2012. The photos tell the story of MDS patients from the different countries of the coalition members.

Press Coverage

Press coverage of the launch event and exhibition included an articles in the online healthcare magazines Primary Care Today and Health Matters (available here and here), and event listings in the Telegraph’s photography events guide and in This is London, a what’s-on guide for London (available here and here).

Life Beyond Limits Photo Exhibition Launch

L-R Sam Pearce (General Manager, Celgene UK & Ireland), Prof Ghulam Mufti (Head of Haematology, King’s College Hospital/MDS UK Patron), Prof Rodney Taylor & Sophie Wintrich (Chairman & CE, MDS UK)

L – R Joanne Anderson, Chris Dugmore (MDS UK Committee Members), Prof Ghulam Mufti (Head of Haematology, King’s College Hospital/MDS UK Patron)

L – R Prof Rodney Taylor & Sophie Wintrich (Chairman & CE, MDS UK), Prof Ghulam Mufti (Head of Haematology, King’s College Hospital/MDS UK Patron)

L – R Prof Rodney Taylor & Sophie Wintrich (Chairman & CE, MDS UK), Sam Pearce (General Manager, Celgene UK & Ireland), Judy Woolfenden MBE (MDS patient, featured in the exhibition representing the UK), Prof Ghulam Mufti (Head of Haematology, King’s College Hospital/MDS UK Patron)

L – R Sam Pearce (General Manager, Celgene UK & Ireland), Judy Woolfenden MBE (MDS patient, featured in the exhibition representing the UK)

Public Exhibition in the Ruskin Wing, King’s College Hospital until Friday 5th October 2012

Sophie Wintrich and Alice Murphy of MDS UK Patient Support Group display information materials alongside the photo exhibition at King’s College Hospital.

The Life Beyond Limits initiative aims to raise awareness of Myelodysplastic Syndrome to a wide audience through events such as the photography exhibition.

 

 

 

 

Staff member at King’s looks at the exhibition. The photos show MDS patients from the different countries of the charities behind the Life Beyond Limits campaign.

To the left are images of Judy Woolfenden, an MDS patient in the UK. To the right are pictures of Kirby Stone, an MDS patient from the USA.

 

 

A visitor to King’s looks at pictures of Niels Jensen, an MDS patient from Denmark. To the left, photos of MDS patient Rosmary Pauer from Canada are displayed.

 

 

 

 

 

The exhibition has helped raise awareness of MDS and the MDS UK Patient Support Group. Visitors to the exhibition can take information materials including leaflets and newsletters.

The exhibition has also been used to help launch the first ever MDS World Awareness Day – taking place on Thursday 25th October 2012.

Read the article ‘Living with cancer, fighting the clichés’ by Sally Gritten , published on Monday 10th September 2012.

Click here to read the article published in the online Saga Magazine

Please note, this article will also appear in Vol 3 of our Newsletter, to be published January 2013.