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As part of their coverage for Rare Disease Day, BBC Online has included the story of an MDS patient – Patricia Ellis – who has attended our London Forum in the past. BBC Online also included a link to our website in their health section.
This is the link to the BBC Online site: here
Findings presented at the 2012 annual meeting of the American Society of Hematology (ASCO) in Chicago earlier this month suggest Myelodysplastic syndromes patients with autoimmune disorders may be more responsive to treatment with Vidaza or Dacogen than patients without autoimmune disorders.
Click here to read the full article on The MDS Beacon.
Access Advocacy, a research body working on behalf of the Department of Health, invites members of the MDS UK Patient Support Group to take part in a survey on what matters to patients and their carers about being in hospital. This will help the Department of Health to develop a new system of ‘Patient-led Inspections of Hospitals’ which will replace Patient Environment Action Team (PEAT) inspections in coming months.
It is important to hear the views of a wide range of patients and their carers. All responses will be kept completely confidential.
Please read the following and click the link to complete the survey if you are interested in taking part:
The Department of Health is establishing a new system of patient-led inspections of the hospital environment, as announced by the Prime Minister in January. In order to develop the questions to ask the patients and their carers, it is important to find out what’s important and really matters to them about the hospital environment.
Here is an opportunity for you to contribute to this. You are invited to take part in this survey if:
The survey can be found here:
http://www.zoomerang.com/Survey/WEB22FNNCWBVHL
Please do take a few minutes to complete the questionnaire, ideally by Friday June 1st; your feedback really matters. All responses will be completely confidential.
Listen to Radio 4’s Money Box programme, broadcast on 13/06/12, which discussed issues around charitable giving.
As the programme information states:
“Donating money to charity has been in the headlines after the Chancellor George Osborne recently dropped plans to limit tax relief on charitable giving. Mr Osborne had announced the proposals in his March Budget, but they provoked a storm of protest from charities. Last year Britons gave £11 billion to charity, according to research carried out by the Office of National Statistics. But while an extra 1 million people donated money to charity, the average (median) amount given per month has fallen compared to 2010. And in real terms the total value of donations remained the same as the previous year. More people have been donating cash via online sites or by text as well as more traditional ways. So what are the different ways to give and what tax reliefs are available? Are you clear about Gift Aid declarations? Do you know if your employer has a payroll giving scheme and how it works? Perhaps you want to leave a charitable gift in your will and want advice on how to do this? Or you might want to give money via an online site or by text and want to know which sites charge less for the service?”
Click here to listen to the programme in full (via BBC iPlayer).
Good Morning America anchor Robin Roberts has been diagnosed with MDS and will undergo chemotherapy and a bone marrow transplant.
The 51-year-old, who battled breast cancer in 2007, said her older sister, Sally-Ann Roberts, will be her donor, as she is a perfect match.
The announcement on 11/06/12 triggered an outpouring of support for Roberts, who has co-anchored the ABC show for seven years.
Please come and join us on the 6th Windsor Great Park Walk this year - Sunday 13th May - starting mid-morning.
Enjoy the day out and optional pic-nic lunch - bring friends, family, children, grand-children, neighbours, dogs - and get sponsored to walk to raise funds for MDS UK.
Walk at your own pace - as little or as much as you'd like.
There are options for a 6km, 10km and 16km walk. Or just sit and enjoy the park and support the walkers.
AAT (Aplastic Anaemia Trust) is organising the day (brilliantly) - with signs, assistance, water stops, safety marshalls etc.
To cover the costs of organising the walk, the AAT is only asking for a £5 donation per adult - which covers all their hard work. Children go free.
We - the MDS UK Patient Support Group - then ask you to get sponsored to walk - and funds raised that way will come to us.
Organising such a walk is extremely time consuming - we do not have the necessary staff to deal with this. It is therefore much easier to team up with AAT who have set up this walk 6 years ago and have very kindly invited us to participate. Thank you to Anna and Bryoni and all the volunteers on the day.
Come as a group and meet others - and raise awareness of MDS that way too.
Registration at Blacknest Car Park is from 9.15 and there are staggered starts from 10am, so everyone should finish together in time for lunch. There will also be face painting for our younger walkers (or the young at heart!).
You can also register ahead of time (preferably) by using the form below - and let us know you are coming so we can meet and greet you.
Windsor Walk Leaflet: Download the flyer
Or you can register on the day.
LUNCH - This year the AAT is offering an optional pic-nic hamper - please see order form here: Download the order form. Or bring your own lunch if you wish - and cakes!
HOW TO GET THERE and Link to the AAT website: http://www.theaat.org.uk
Please save the date already - Sunday 13th May - and advertise it on your Facebook pages.
Please encourage others to take part - or to sponsor every step!
We really need your assistance this year. We are starting our new nationwide "Assessment for Support in MDS" Project - which will span the next 3 years. We have secured funds for 1 year so far. We need everyone's help to make sure we can complete this important project to the end.
To sponsor a particular walker - please use our online donation site - and specify the name of the person:
Virginmoneygiving-Windsor-Walk
Below: Windsor Walk 2011 - with some of our MDS patients - Russell and Jyoti, their friends and family and MDS UK Chairman Rodney and family and Patient Liaison Sophie. Chairman Rodney raised £600 last year - thank you! (Sophie was not quite as effective...but will do better this year) :
Hope to see you there.
Thank you!!
Calling all Marathon runners! The ballot to get a place is now open for the Royal Parks Foundation Half-Marathon. Would you like to do a sponsored run for MDS UK ?
We need some volunteers to run to spread awareness of MDS – and raise funds to maintain our services to patients in future.
The ballot to get a public place is open for 9 days – until the 26th January and costs £45.
We can request some charity places – but they cost £120 each and we need to know that someone will run for us.
Let us know if you are interested please.
Here is the link for the public places and ballot:
http://royalparkshalf.com/ballot/
Thank you!!
Anyone with a place in the Brighton Marathon ?
Virgin Money Giving – who we use for donations – have a competition to win a potential £500 if the runner uses their fundraising page to collect donations.
Hurry up – as closing date is 26 Febr 2012!
Brighton Marathon fundraisers. ‘Set up and Activate your Page Prize Draw’ is open to all fundraisers who have a confirmed place in the 2012 Brighton Marathon.
Even if you are not running – please promote this to all your contacts – in case they have a place in the Brighton Marathon and encourage them to set up their Brighton Marathon fundraising page with Virgin Money Giving.
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/fundraiserCharitySelectionOpen.action
Closing date for entries into the competition is 26 February 2012.
Please do let us know if you are running – we can provide logo, information, support – and we would like to include your details on the website – with photos and a brief message.
web: http://uk.virginmoneygiving.com | twitter: @vmgiving | blog: http://blog.virginmoneygiving.com
https://mdspatientsupport.org.uk/support-us/fund-raising/
Message and request from a UK nurse (Tracy Nelson):
“As a nurse I really want to see good individualised patient care within the NHS. Unfortunately this is not always the reality. Nurses are struggling to cope with the amount of patients allocated to them. Please support nurses with this campaign. So everyone realises nurses really want to care and do their job well. The Goverment just needs to give us the capacity to do our job.
Thank you for reading.”
On Friday 15th June 2012, an advertisement for the MDS UK Patient Support Group will appear in a supplement printed by the Guardian Newspaper as part of a full page article by Cancer 52 that will help raise awareness of rarer cancers.
Cancer 52 are an alliance of more than 50 organisations working to address the inequalities that exist in policy, services and research into the less common cancers and to improve outcomes for patients with these highly challenging diseases. MDS UK Patient Support group is an active member of Cancer 52.
Find out more about Cancer 52 by visiting their website: http://www.cancer52.org.uk/
Click here to see the full supplement.
