MDS World Awareness Day 25th October – Request your pack now!

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.

The Westminster Government will be changing the way new medicines are priced across the UK.

These changes could affect the type and number of drugs that are made available on the NHS. We think people with cancer should influence these decisions but we want to know what you think.

We do not think the Government has done enough to involve people with cancer in the development of this new system.

Prostate Cancer UK are working with other cancer charities, including MDS UK, to gather the views of people affected by cancer. They will share their findings with the Government so that the voice of people with cancer can help shape their plans.

Please help by filling in a short online survey now. Click the link to have your say: https://www.surveymonkey.com/s/PCUK_value_based_pricing

The deadline for participating is 1st October 2012.

For other ways to take part and for more information, visit: www.prostatecanceruk.org/valuebasedpricing

 

In 2013 the annual meeting of the European Bone Marrow Transplant Society (EBMT) will be held in London.

As part of the annual meeting, the EBMT 2013 Patient & Family Day is to be held Saturday 6th April 2013. This day provides an important opportunity for patients, donors and carers to meet with leading international transplant clinicians. A series of plenary sessions and workshops throughout the day will allow both formal and informal interactions between delegates and speakers. Patients who have had, or expect to have, a bone marrow transplant are given the opportunity to learn about the latest developments in the field, to understand how best to manage any complications and how to adjust to life after transplant. Previous and prospective stem cell donors too will have the chance to gain a deeper understanding of the importance of their donation.

Click here to fill in the online Patient Questionnaire – participation will allow patients to influence the topics covered on the EBMT 2013 Patient & Family Day.

The survey will also allow you to show your interest in attending.

Please fill out the questionnaire by 21st September if you can.

From Tuesday 25th September 2012 to  Friday 5th October 2012, King’s College Hospital in London are showcasing photographs by the award-winning photographer Ed Kashi.

The ‘Life Beyond Limits’ exhibition offers an inspirational glimpse into the lives of six individuals across the world who are living with myelodysplastic syndromes (MDS).

Click here for more information.

Visit the Life Beyond Limits site for information about the campaign.

 

 

 

 

 

 

 

 

This event is being made possible thanks to the generous support of Celgene.

 

Maverick TV are looking for paticipants for a number of short films about cancer to run during a new ground breaking fund-raiser on Channel 4 in October, called STAND UP TO CANCER. Money raised will go towards funding for cancer trials.

The films will feature in the live show and be instrumental in encouraging viewers to donate. Each 3 minute film will feature very different individuals affected by cancer and possibly their family and / or friends. The films will tell the stories of different age groups, different cancers (including rarer cancers), different impacts, both physically and emotionally, and each person or families unique way of dealing with the illness.

The main aim of each film is to demonstrate cancer can, and does, affect everyone, in one form or another. Maverick TV want the films to be surprising, unexpected and shocking but also inspiring. They will be shot in a striking, filmic way, with high end advertorial qualities.

If you are interested…

Timings are reasonably tight as Maverick TV are filming throughout September, with transmission the third week of October 2012. Those selected to have their story told will be filmed for up to 3 days; this will be flexible around health, work commitments, treatments etc. Most of the filming will be at home, or at other locations if relevant to your story.

Maverick TV have cast some of the films already, so are looking for the final few candidates – to this end, Maverick TV would like to speak to those interested by the end of August latest.

If you are interested or would like more information, call Producer Angela Arora directly on 0207 874 6659 or email a.arora@mavericktv.co.uk, leaving your name, age and telephone number and an appropriate time to call, and she will contact you.

Click here for full flyer.