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Volunteers needed!

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MDS UK - Volunteers needed!
Help us to improve the lives of everyone affected by MDS by volunteering your time and experience. Volunteers play a vital role in MDS UK; the expertise and time given from all our volunteers is hugely valued and makes a big difference to our charity. We simply could not do what we do without you.  We currently have three important volunteer roles available.

 

Treasurer (voluntary post)

After many years with us, our wonderful treasurer, Don Barrett, has decided to dedicate more time to his new grandchildren. We are deeply grateful for the many years Don has supported us, and the care and skill he's brought to managing our finances.  Could you step into Don’s shoes?  You don’t have to be a qualified accountant, just have financial management experience, a head for figures, a working knowledge of Sage Accounting/Payroll systems and a love of spreadsheets!

 

Trustee (voluntary post)

We are currently looking to recruit a number of Trustees to help steer the charity as we develop and expand. Applicants from all backgrounds and experience will be considered, but those with legal, IT, or research experience would be particularly welcome.

 

Newsletter Editor (voluntary post)

Do you have a flair for words?  An eye for detail?  A love of grammar? If so you could be the perfect person to edit and proofread our monthly newsletter, as well as help with copy for our patient information literature, and we’d love to hear from you!

If you're interested do get it touch

If you are interested in any of these roles, please email our Operations Manager, Debbie at dhickman@mdspatientsupport.org.uk for further information.

 Want to Chat with others but not keen on Facebook? 

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Try our newly upgraded Chat Forum,  it's the perfect answer! Whether you are a lapsed user, or new member - do give it a try! Leave a new message in one of the folders, ask a question, respond to a message that’s already there or just say hi!

Screenshot of MDS UK Chat Forum Subject index page listing some of the subjects discussed

When we started our MDS Community Facebook group, our popular Chat Forum shrank, as everyone migrated to Facebook but many of you are coming off Facebook, or are not keen to use it anyway.

The Chat Forum has been newly upgraded and reorganised to make it easier to navigate.  It offers a direct link to other patients and relatives, it is protected by a coded username and a password, and arranged via themed folders. You can find information too, such as Travel Insurance recommendations and tips, messages from our Local MDS Groups, messages about transfusion needs, stem cell transplants and much more.

Evidence has shown that peer to peer support is important to people coping with cancer.  In the words of Lidia Schapira, MD, FASCO

Peer support through web-based platforms, lets a person vent their frustration, learn about new treatments or research protocols, and exchange information. Knowing that others have had similar experiences and that they can help, may make all the difference in how someone lives through the challenge of cancer....Hearing that you are not alone can inspire you or give you a little more confidence to overcome a difficult symptom or side effect. Peer support may help explain treatment options or provide a deeper understanding of your diagnosis. It may point to new research that may be relevant to your situation.

So give it a try!

Simon Wilkes chosen by Birmingham FA as ambassador with charity partner Anthony Nolan

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The Birmingham Football Association has just announced their collaboration with our amazing ambassador Simon Wilkes and charity partner Anthony Nolan. Simon will be working with the FA to increase the number of people registered as a Stem Cell donor across the West Midlands and Warwickshire using Grassroots Football as a stimulus for individual recruitment. This is fantastic news for the Wilkes family.

'Words can't explain what all this means to me, I never thought in a million years I would get the story this far...so excited to get this off the ground and potentially save lives' - Simon Wilkes.

 

Simon is an MDS patient himself and he and his wife Lynn and son Ben have supported MDS UK for many years.  Read more about Simon's own patient experience here:  https://mdspatientsupport.org.uk/mds-stories/simon-wilkes-hopefully-so-many-lives-will-be-saved/

Simon and his family are also fervent supporters of Anthony Nolan, organising stem cell donor recruitment drives in their local area, using his network as a football coach.

The Anthony Nolan Charity aims to increase the number of people signed up to the Stem Cell Donor Register. across the UK. There are currently 880,000 individuals nationwide that are signed up.

The Wilkes family had been involved in Grassroots Football for 22 years, before tragedy struck in 2017 when their son Olly passed away. Their last day together as a family was at a charity event, 11 days prior to Olly's passing and they were raising funds for two chosen charities, MDS UK and Anthony Nolan. Since Olly’s passing, many of his friends and family have signed up to the Stem Cell Donor Register.

Matt Beveridge, stem cell donor

After joining the register, one of Olly's friends, Matt Beveridge had the call from Anthony Nolan as he was found to be a match. Matt Beveridge was a local hero, his story was featured in the local press and on local radio. Matt's Anthony Nolan story is on the video below. He was later to find out he had saved the life of a young Spanish woman.

The Wilkes family made a decision to organise memorial events as a legacy to 'Our Olly' in heaven. The first Olly Wilkes Memorial Football Tournament was organised for 19 May 2018 with the Anthony Nolan recruitment team attending. This resulted in a further 52 people signing up to the stem cell register.

Driven by the need to raise awareness of MDS, and stem cell donations, Simon, along with family and friends & their beloved "Withymoor Colts Family" continue to organise events like these.

Due to COVID, the event was postponed several times – but The Olly Wilkes Football Tournament will finally go ahead on 25th June 2022. This event is very special and a further legacy to their son Olly. Funds raised for the tournament will be divided between MDS UK, the Lily Mae Foundation and Withymoor Colts RE-UNION.

Simon and the committee organising this special event are looking for anyone able to support it with gifts for the Grand Raffle, Memorabilia Auction, tombola or any other ways to assist. Any enquiries - please contact Simon via Ashleigh Venables at fundraising@mdspatientsupport.org.uk, or direct to simonwilkes27@blueyonder.co.uk

The Wilkes family thank Ikuto Group Ltd for their sponsor!

MDS Patient Support

For more on the Birmingham FA collaboration see birminghamfa.com 

 

 

Logo - RideLondon-Essex challenge 2022
Simon Wilkes and family

New UK CEV list identifies highest at-risk patients for COVID-19 infection

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CEV - (Clinically Extremely Vulnerable)

Technically speaking, no MDS or CMML patients should have issues accessing vaccines or anti-COVID19 medication.

If however, you encounter problems, do point any GPs to the document below, which is a new list identifying exactly and precisely who the highest at risk patients are, in terms of COVID-19 infection. MDS, CMML and transplant patients are all listed.

This is the work of a new UK advisory group, supported by the NHS England RAPID-C19 team.

'The recommendations are to support the deployment of approved medications for treatment or prophylaxis, potentially across a range of scenarios.'

Access to Evushield should therefore be made available, according to the recommendations. Click below to read the report.

(Please note this CEV report is a UK only initiative.)

Defining the highest-risk clinical subgroups upon community infection with SARS-CoV-2 when considering the use of neutralising monoclonal antibodies (nMABs) and antiviral drugs: independent advisory group report - GOV.UK (www.gov.uk)

Read the ICBCC Impact Statement and forward letter to your MP

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COVID-19 is not yet over for blood cancer, as you all know. Access to medication and services has been difficult, in the UK, and other countries.

The International COVID-19 Blood Cancer Coalition (ICBCC) has updated their website in May - with further supporters for the cause, and a call for action.

We urge you to read the Patient Impact Statement, and consider forwarding the letter to your MP, asking them to raise the topic in parliament. You could ask;

 

  • What are the plans to increase research to better understand the vulnerability of blood cancer patients to COVID-19?
  • Why are not all anti-Covid medications available in the UK yet?
  • When can we expect more psychological services for blood cancer patients forced to isolate?
  • Write to your MP, with a short summary of how you are remaining in isolation, what it means to you and your family, your employer.

Click here to read the ICBCC Patient Impact Statement 

A fantastic day at RideLondon 2022

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Logo - RideLondon-Essex challenge 2022

The sun was shining for our trio riding for MDS on Sunday 29 May - Tim Woolley, Adrian Skardhamer and Alexander Myers - all cycled 100 miles in the RideLondon-Essex 100 challenge in support of our charity! Our brilliant riders arrived within an hour of each other.  

Alex Myers

Image of Alex Myers after cycling 100 miles for MDS UK

 

Alex was the first to arrive after 6h 32min followed by Tim at 7h 40min and Adrian 7h 47m. A huge CONGRATULATIONS!! and thanks to all of them!!

Tim Woolley

Image of Tim Woolley after cycling 100 miles for MDS UK

Adrian Skardhamer

Image of Adrian Skardhamer cycling 100 miles for MDS UK

  Alex and Tim spotted each other and managed to get a selfie mid the race and Adrian completed the race using a mountain bike which added an extra challenge as it was heavier than the other road bikes competing. 

Image of Tim Woolley and Alex Myers cycling 100 miles on RideLondon-Essex 100 challenge

We had a great spot next to Tower Bridge to welcome our riders. Sophie met one of our youngest supporters Rajika who spotted our logo and remembered it from when her school fundraised last year for MDS  The family are now in contact about another potential fundraiser. 

Image of Tim Woolley, Adrian Skardhamer and their second cousin Chris Charlwood from MDS UK
MDS Patient Support

Once in central London, they completed their ride to rapturous applause at Tower Bridge – a stunning Finish Line for the 100-mile challenge!! 

They have raised nearly £3,000 so far for MDS! 

Please help by donating via their Just Giving pages.

Tim Woolley says on his JustGiving page 

I will be doing this to raise money for MDS which is a charity that is very close to my family. My uncle John was diagnosed with MDS a number of years ago and unfortunately for everyone who knew him, he eventually passed away from it. 

Adrian Skardhamer's JustGiving page says 

While, I'm a keen-ish off-road cyclist and normally ride a couple of times a month (if it's not raining, or windy, I'm not hungover, and there's a pub at the end), this ride is still going to be an absolute nightmare for me. I will be doing this to raise money for MDS as my uncle John passed away from it. Please help me out, not least cos if I don't make the target I'll have to pay the balance as well as ride the stupid race. Cheers Ade 

Alexander Myers JustGiving 

I am aiming to complete RideLondon-Essex 100 2022 to raise funds for the charity, having previously done so in 2018. 

 

Alex's father-in-law is our wonderful treasurer Don Barrett who has been doing an amazing job for so many years. We met Don from our previous Chair, Prof Rodney Taylor – who did such a huge amount for our charity - and passed away from MDS  - after serving as Chair for almost 7 years. Rodney's wife has also always been hugely supportive of MDS UK. 

A HUGE THANK YOU to Tim, Adrian, Alex and all their friends and sponsors for their support! 

Their efforts raise public awareness of MDS and our small charity MDS UK. We need as much help as possible in order to carry on our work of supporting patients and campaigning with them! 

The Route 

They set off from Victoria Embankment in central London and head into Essex via the historic Epping Forest. Once in Essex, they cycled past some of the county’s most picturesque towns and villages, including Ongar, Fyfield, the Rodings and Great Dunmow, before joining a section of the 2014 Stage Three Tour de France route. 

They went through Felsted and around the county town of Chelmsford before heading through Writtle and back towards Ongar and central London. 

MDS Patient Support

If you've been inspired by this story, why not join us next year for RideLondon 2023. You can take part in a 30, 60 or 100 mile race to support MDS.  If you're interested email Ashleigh Venables - Fundraising Officer MDS UK at fundraising@mdspatientsupport.org.uk

MDS UK has new recruits!

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Exciting staff news at MDS UK

After a busy recruiting period, we have filled our advertised positions and are delighted to say we have 3 new people who’ve joined our team!

Continue reading…

REPAIR-MDS : Repurposed Drugs to Improve Haematological Responses in Myelodysplastic Syndromes

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MDS Patient Support

Research FOR Patients
-For an informed and empowered opinion-

All the trials listed on our site have been properly vetted for scientific accuracy. Many thanks to Dr Simone Green – Hull and East Yorkshire Hospitals NHS Trust - for the continuous work in updating the listing.

REPAIR-MDS Repurposed Drugs to Improve Haematological Responses in Myelodysplastic Syndromes

  1. SUB-TYPE OF MDS: All subtypes of MDS
  2. SEVERITY OF MDS:  Lower-risk MDS
  3. NAME OF DRUG: 
  4. Aims and benefits: REPAIR-MDS seeks to repurpose existing drugs in order to dramatically improve the outlook, health and quality of life of people with MDS. The trial treatments aim to improve the production of healthy functioning blood and immune cells that will fight against infections and boost the immune system's action against the MDS clone.
    REPAIR-MDS design is a is a multicentre open label phase 2 randomised controlled trial which will compare VBaP (sodium valproate, bezafibrate, medroxyprogesterone) with danazol in patients who have received either Erythropoiesis Stimulating Agents (ESAs) and lost response, not responded to ESAs or are deemed unlikely to respond to ESAs.
  5. Primary outcome: Haematological improvement (HI) in each arm and in the trial overall, with 25% or more of the participants having HI in each arm and overall. [ Time Frame: 12 months ]
  6. Secondary outcome:  Reduced burden of red cell and/or platelet transfusion in each arm and in the trial overall, as per the IWG 2018 response criteria. [ Time Frame: 12 months ] Changes in transfusion requirements will be assessed in each participant by comparison with their individual 16-week lead-in baseline as determined by the IWG 2018 haematology response criteria in patients with MDS.
    • Duration of haematological response [ Time Frame: 12 months ]
    • Clinically meaningful haematological responses that persist for 16 weeks or longer.
    • Reported improved Health Related Quality of Life scores in each arm and in the trial overall. [ Time Frame: 12 months ]
    • The four Health Related Quality of Life questions measure
      1. 1 - self-perceived health (excellent, very good, good, fair, or poor)
      2. 2 - number of days out of the past 30 that physical health was not good
      3. 3 - number of days out of the past 30 that mental health was not good,
      4. 4 - number of days out of the past 30 that usual activities were limited by poor physical or mental health of life scores will be evaluated using established protocols.
    • Overall survival

Read More

Important Update about our Online Patient Meetings

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For the time being at least, we are planning to continue meeting on Zoom, rather than face-to-face.

 

However, we are aware that if you have a hearing impairment, you may have missed registering for our Zoom meetings because you were worried you would not be able to hear what people were saying.

 

Good news! With the latest Zoom updates, MDS UK is now able to offer live subtitles at all our Zoom online meetings. It isn't perfect, as all of you used to using subtitles will know, because it depends on the clarity of each speaker! But it will help you to follow the conversations and join in the discussion.

MDS Patient Support

If you would like to use this service, please make sure you request it in the questions and comments when you register for the Zoom meeting. Our Office Manager, Caroline, will then be able to set it up in advance and guide you through the process on the day of the meeting. It’s quite straightforward to set up and we hope it will enable more of you to join us.

Would you like to see an MDS Specialist?

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The UK MDS Forum is a UK specialist group of haematologist, which works extensively with other MDS experts worldwide. Its haematologists are MDS experts and have extensive experience treating MDS patients. They can work with your local haematologist to offer you the best possible care and advice.

Under NHS rules, you are free to seek a referral to the hospital of your choice.

To get a referral, please just ask your GP or your haematologist to refer you. You will receive an appointment in the post as soon as possible.

If you'd like more information please contact us info@mdspatientsupport.org.uk or call 020 7733 7558

MDS Patient Support

How can you access this service?

MDS is a rarer disease, and often requires an MDS expert to evaluate the exact sub-type of MDS, or explore and discuss additional treatment options, including clinical trials.

Your haematologist, or GP, needs to refer via the traditional referral system.

An appointment will be arranged after receipt of a formal referral from either the GP or local haematologist, which should contain as much detail as possible, specifically results of bone marrow tests and details of treatment, if relevant.

Note:
The online clinical consultations with Prof Bowen are no longer available unfortunately.
The patients who took advantage of this service were extremely satisfied, but the general uptake amongst patients was not as high as initially hoped.
Should such a service be made available again, via Leeds, or elsewhere – we will of course let everyone know.

Would you like to share your questions about MDS?
We can help you - Contact us
Send an email to info@mdspatientsupport.org.uk
or call 020 7733 7558

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