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 pick-nick 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.

AAT (Aplastic Anaemia Trust) is organising the day (brilliantly).
The registration fee of approx £12 goes to the AAT – which covers all their hard work + pick-nick.  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 staff 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!).

The exact entry fees for this year will be confirmed soon.

You can also register on the day.

HOW TO GET THERE and Link to the AAT website:  http://www.theaat.org.uk/theaat.nsf/0/320507510B31B2B9802576DD0038DC18?OpenDocument

More news and details to come – but please save the date already – and advertise it on your Facebook pages.  Entice others to take part.

We really need your assistance this year.  We have gained a 2nd member of staff – who will start in February.  We have funds to finance her for 1 year only so far.  So we need everyone’s help to make sure we can afford her in years to come.

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!!

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!!

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

http://www.mdspatientsupport.org.uk/support-us/fund-raising/

“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.”

http://epetitions.direct.gov.uk/petitions/19157

The Rarer Cancers Foundation is keen to do all it can to support the NHS in ensuring that people with rarer and less common cancers have the best experience of their care and treatment possible.  Collectively we can help to make a real difference to the outcomes for those with advanced cancer.

In order to do this, we need to learn more about the experiences of the people we support around what they value when they have advanced forms of cancer.  The feedback from your charity’s supporters is vital and we would therefore be grateful if you could please circulate the attached letter to your supporters and advertise this survey on your website. The survey can be found at:  https://www.surveymonkey.com/s/Patients_views.

Your response is really important to us so we can have as broad a picture as possible and therefore we are seeking input from cancer patients, their family members, carers and others who have an insight in this area.

The survey will close on the 30 January 2012 and the findings from this survey and other research that we are currently undertaking for this project will be published late February/early March 2012.

Should you have any queries or need help with this survey please do not hesitate to contact me.

With best wishes

Debbie de Boltz

Executive Director

Rarer Cancers Foundation

incorporating the Rarer Cancers Forum

Mob: 07889 726269

Tel:  01227 738279

www.rarercancers.org.uk

John and Peter have volunteered to help to lead.

Sophie  - Tel 0207 733 7558

MDS Patients – please inform your haematologist and clinical nurse specialist of this event.

If you have missed it – here is the link to the PDF:

http://projects.mediaplanet.com/uk/pain_1_8527/your_blood_small.pdf

To complete, here is the link to the short questionnaire that will be available throughout August and September.

And here is further information from NICE, regarding the purpose of the survey:

At NICE, we know that it is important that members of the public know about our guidance, to help them to understand the care and treatment that the best evidence suggests that they should receive.  We also know that there is more work needed to promote understanding and awareness of evidence based guidelines amongst the public, and we are hoping that you will be able to help us to do this.

To help us improve how we do this, NICE is conducting a survey to collect information on what patients and the public think of the way our current guidance is presented. We would be very grateful if you could complete a short questionnaire asking about your knowledge and experience of using our clinical guidelines. The questionnaire is a mixture of multiple choice questions and opportunities to provide more detailed replies.  The survey should continue running throughout August and September.

This survey is part of a larger study, DECIDE, which is a five-year collaborative project funded by the European Commission’s 7^th Framework Programme and is designed to research and improve the way healthcare evidence and recommendations are presented in clinical guidelines.

We would like to collect as many responses as possible to this survey.  I would be very grateful if you could help distribute the link to this survey, by

-          Filling in one of our surveys yourself or

-          Posting the link to a blog or a news feed for your organisation or

-          Sharing the link on your Facebook or Twitter feeds or

-          Sending the link to anyone you think might be interested in the survey.