this must be archive.php

Groundbreaking research: is the bone marrow environment key in Myelodysplastic Syndromes?

Written by

We were delighted to welcome Dr Syed Mian, Senior Research Fellow at the Francis Crick Institute in London, to our online support meeting on September 9th 2025.  
Dr Mian presented;
  • his proposal to conduct new research into the role the bone marrow environment plays in the development of MDS stem cells.
  • The study would also investigate what it is that causes healthy blood stem cells in the bone marrow of MDS patients to effectively become dormant, and how these healthy cells could be reactivated.
To learn more about this potentially groundbreaking project watch the recording of Dr Mian’s presentation below.

Watch the presentation

"Is the bone marrow environment key in Myelodysplastic Syndromes?"

(Recorded at the MDS UK online support meeting, September 2025)

About Dr Syed Mian

Dr Syad Mian, Post Doctorial Fellow, Bonnet lab Haematopoietic Stem Cell Laboratory, Francis Crick Institute, London
Dr Syed Mian is a Senior Research Fellow at the Francis Crick Institute, London.
He earned a BSc in Biomedical Sciences from the University of Greenwich, where he received the Institute of Biomedical Sciences President’s Prize in 2010. He completed his PhD at King’s College London’s Comprehensive Cancer Centre, specialising in myelodysplastic syndromes, and continued there as a postdoctoral researcher after graduating in 2016. His work has been widely published in leading journals.

How you can you help

Dr Mian is preparing grant applications to secure funding for this important project. Support from the MDS community can make a difference in strengthening his case to funding bodies.  If you would like to offer feedback, support or encouragement he would be delighted to hear from you!  His direct email address is syed.mian@crick.ac.uk

Further information and resources from MDS UK

To learn more about MDS and access trusted support, explore the further information and resources MDS UK offers
  • You can download our comprehensive MDS Patient Guide for clear, reliable information about living with MDS and understanding your diagnosis.
  • Find out how MDS is treated and what options might be right for you on our MDS Treatments page
  • You don’t have to face MDS alone — explore our Support section for practical advice and emotional support via our support line and virtual meetings.

Great North Run 2025 – Congratulations Team MDS UK!

Written by

Tyne Bridge at the start of the Great North Run 2025 with Red Arrows flying overhead in red, white and blue, celebrating MDS UK runners
This year’s Great North Run attracted the highest number of runners ever.  In the words of GNR founder Sir Brendan Foster,
‘the North East turned out in force to provide simply the greatest support you’ll see anywhere in the world – the sun was shining in Newcastle and the Red Arrows were roaring overhead. What more could we ask for?’
Our sincere thanks and congratulations go to those who ran for MDS UK this year. 

Great North Run 2025 MDS UK Runners

Kirsty Graham and Meghan Yarnold

Kirsty shared,
“My dad was diagnosed with MDS last year, so it is a cause close to my heart.”
Together with Megan, she completed the Great North Run with strength and determination, smiling from start to finish.

Inspired to take part in the Great North Run 2026? 

We’d love you on Team MDS UK –Sign up to register your interest (Registering your interest isn’t a commitment — it just lets us know you’d like to find out more.) 

Victoria and Jamie Price 

Victoria and Jamie ran for Victoria’s mum, Marilyn, who was diagnosed in 2009.  Victoria says

‘after having over 40 blood transfusions and countless biopsies to figure out what was wrong, thankfully, at Kings College Hospital in London, the correct diagnosis was found.  MDS UK provides such great support to patients and their families, and we felt compelled to help out with raising money for their cause’. 

Thank you to all of our amazing 2025 GNR runners!

A huge thank you to Kirsty and Megan, Victoria and Jamie, and also Kriss Marco and Amanda Young, who all proudly took to the streets of Newcastle to run the Great North Run for MDS UK.
Your dedication, energy and fundraising make a genuine difference.  We will make sure every pound raised is spent supporting those affected by MDS.

Want to take part in next year's Great North Run?

We’d love you on Team MDS UK for the Great North Run 2026 –Sign up to register your interest. (Registering your interest isn’t a commitment — it just lets us know you’d like to find out more.) 

 

Write your will for free this October with MDS UK

Written by

Graphic for Free Wills Month October 2025 - showing four adults of retirement age considering writing their wills with MDS UK
Free Wills Month runs every March and October, and gives people the chance to write or update a simple will for free with participating UK solicitors. There’s no pressure to leave a gift to charity, but many choose to, helping fund vital work.

Free Wills Month MDS UK

MDS UK have partnered with solicitors Darwin Gray to offer members and supporters the opportunity to create a free basic will, or mirror wills for couples. For complex wills, additional costs may apply.

 

Download our free 'Gifts in Wills' guide 

If you're interested in leaving a legacy gift to MDS UK, you can download our 'Gifts in Wills' guide which outlines the support that MDS UK provides, the different ways you can leave a legacy, our commitment to you and the essential details you’ll need if you’re considering leaving a gift to us.

Questions about writing your will?

If you have questions about writing your will please get in touch with us by calling call 020 7733 7558 or emailing info@mdspatientsupport.org.uk

A Christmas message from our CEO and Chair of Trustees at MDS UK

Written by

Illustration of a winter Christmas scene in pencil style with a Christmas tree and snow-covered village, reading Merry Christmas from MDS UK
Dr Blossom Bell PhD, CEO of MDS UK Patient Support Group

Dr Blossom Bell, PhD - CEO MDS UK

As the year draws to a close, I’d like to send my heartfelt wishes to everyone in our community. For many, this season brings light and togetherness, but for those who have received a recent diagnosis, or are having treatment, waiting for test results or grieving the loss of someone dear, it can feel lonely and heavy. If this is the case for you, please know that you are in our thoughts, and we wish you strength and comfort during this festive period.

Reflecting on the year at MDS UK

Since stepping into the role of CEO, much of my time has been spent listening, learning, and building relationships across our clinical and support networks. It has been a purposeful and busy period, and I am deeply grateful for the strong foundations laid by my predecessors and for the dedication of our staff, volunteers, trustees, and supporters. Together we have created a charity that truly matters, and my commitment is to build on that legacy with clarity and care.

Supporting patients, families, and carers affected by MDS

As we move into the new year, my focus will be on shaping a clear plan to expand and realign our support services with what matters most to patients and families. Our overriding aim is to improve quality of life for anyone affected by MDS, whether you are a patient, a family member, a caregiver, or have lost someone to the disease. We will take our time over this, as we want to ensure every step meets the needs of our community. One initiative I am excited to introduce is a Patient and Carer Representative Group, which will help us keep your voices at the heart of what we do. I look forward to sharing more details soon.

MDS UK support line and festive Opening Hours

In the meantime, if you need to talk or seek guidance, our support line is open Monday to Friday, 9 am to 5 pm on 020 7733 7558, or you can email info@mdspatientsupport.org.uk. Please note, our lines will close at 5 pm on Tuesday 23 December and reopen on Monday 5 January 2026. During this time, we will respond to urgent emails.

Looking Ahead

Whatever the festive season looks like for you, whether lively or quiet, my hope is that you find moments of comfort, connection, and calm. Thank you for your continued support. We look forward to being here for you in the year ahead.

Warm wishes

Dr Blossom Bell, PhD - CEO MDS UK Patient Support Group

Illustration of a winter Christmas piece of holly in pencil style making a divider on the page
Lin Holder, Chair of Trustees of MDS UK Patient Support Group

Lin Holder - Chair of Trustees, MDS UK 

As we hurtle towards the end of 2025, myself, and the Trustees would like to extend our thanks to Blossom our CEO, the staff, the fundraisers, and the whole MDS community that we serve. 

Commitment to patients, families, and the future of MDS Support

For those who are just diagnosed, living with, or coping with loss, we extend our good wishes to you all. The festive season can be overwhelming when you are living with this disease. But we extend our continued support to you now and going forward through 2026, and beyond. 

Blossom and her team are planning some exciting developments in how we support you, and your family, through your MDS journey. The Trustees are fully committed to this programme of change, new initiatives, and, of course, continuing to work with the medical community. We will continue to be The Voice of MDS. 

Our sincere best wishes to you all. 

Lin Holder
Chair of Trustees. 

Illustration of a winter Christmas scene in pencil style with a Christmas tree and snow-covered village as an end graphic for the page.

Support Joe Thomas: Swimming the Channel for MDS UK!

Written by

 

It’s true what they say – you can’t keep a good man down! In 2023, Joe Thomas completed an extraordinary 100-mile ultra-marathon, raising over £12,000 for MDS UK after his dad, Pete, was diagnosed with MDS in 2022.
Now Joe is preparing for another Herculean challenge : swimming the English Channel! – 21 miles of cold, unpredictable waters – all to raise vital funds for MDS UK.

Pete and Joe Thomas

Joe Thomas sitting arm in arm with his dad Pete, smiling together in support of MDS UK

Why Joe is swimming the Channel for MDS UK

Joe’s dad, Pete, was diagnosed with MDS in 2022, and since then the family has been supported by MDS UK.
"Thankfully, our family has had incredible support from MDS UK, an extraordinary charity that provides invaluable help to patients like my dad."
Looking for ways to support MDS UK, Joe has taken on challenges that push his body and mind to the limit.
“Any donation, big or small, will make a real difference,” says Joe. “It will help other MDS patients get the support they need when they receive a life-changing diagnosis.”

From the slow lane to the channel

When Joe decided to take on this challenge, he couldn’t swim front crawl. Starting in the slow lane of his local pool, he gradually built up his technique, stamina, and resilience.
In 2025, training moved outdoors to Dover Harbour, where Joe braved icy waters and powerful currents to prepare for the Channel’s notorious conditions – often described as the “M25 of waterways.”

Watch Joe train for his English Channel swim

When will Joe swim the Channel?

Depending on weather and sea conditions, Joe is aiming to complete his English Channel swim in Spring 2026. The exact date will be confirmed closer to the time, as Channel crossings rely heavily on favourable tides, safety clearance, and calm weather windows.
Joe’s determination and preparation are unwavering – and with every training session, he’s getting closer to achieving his goal of swimming the Channel for MDS UK.

How you can support Joe and MDS UK

MDS UK receives no NHS or pharmaceutical industry funding. Every service – from running the helpline, to support meetings, research updates, and patient resources – relies on fundraising from people like Joe.
Your support matters. Here’s how you can help:

Thank you Joe Thomas

We are deeply grateful to Joe for his courage and determination. By taking on the challenge of swimming the English Channel, he is helping bring hope and support to countless families affected by MDS.

 

About MDS UK Patient Support Group

MDS UK is a small, dedicated charity supporting patients and families affected by Myelodysplastic Syndromes (MDS) and CMML. We provide:
  1. A national support line for patients and carers
  2. Online support meetings often with specialist speakers
  3. Information resources and guides
  4. This website
  5. Advocacy and updates on the latest MDS research

Add a Robin to Our Memory Tree for Christmas

Written by

This Christmas, we invite you to add a robin to our Memory Tree — a special way to remember someone you miss or send a message to someone you love. Each robin on the tree represents hope, comfort, and connection within our MDS community.
Robins remind us that those we love are always near. You can add your own message or photo to make your dedication personal. Your donation will help MDS UK continue supporting people living with MDS across the UK.

Find out more from MDS UK

MDS, CMML and the newly published NHS 10-Year Health Plan

Written by

On July 3rd, after months of consultation with health care professionals, patients, caregivers, support charities (including MDS UK), health alliances and industry partners, the government published its much-anticipated NHS Ten Year Plan. 

Cover page of the NHS Ten Year Health Plan titled 'Fit For The Future', outlining key reforms in UK healthcare including digital transformation, community-based care, and disease prevention

NHS 10 Year Health Plan: : What it means for MDS/CMML patients and rare blood cancers

 

Subtitled ‘Fit For The Future’, the NHS 10 Year Plan focuses on three key shifts in healthcare delivery over the next decade: 

  • Hospital to community: wherever possible, shifting care from being hospital-based to community or home based. 
  • Analogue to digital: through improved IT, easy-to-use apps and the increased use of AI, reduce the NHS’s administrative burden and risk of delays or errors in communication.  
  • Treatment to prevention: improve outcomes and overall health, and reduce the strain on NHS services, by preventing as much serious illness as possible. 

 

 

MDS UK Patient Support Group and the NHS 10 Year Health Plan

 

MDS UK  welcomes the plan and is pleased to have been included in the consultation process. It is punchy, ambitious and includes some very bold targets, such as:

  • The eradication of cervical cancer by 2040

  • The implementation of single patient records (thereby reducing the need to retell your story each time you are treated somewhere different). 

  • A strong focus on reducing healthcare inequality and improving access to treatments

 

 

Inequality in MDS care must be addressed

 

However, for those living with Myelodysplastic Syndromes (MDS) and CMML (Chronic Myelomonocytic Leukaemia), inequality in care is still a major issue.

We see inequality not only in socio-economic and ethnic minority contexts, but also:

  • When speaking to older patients who feel they’ve been ‘written off’ because of their age, which we see as unacceptable and unethical. 

  • We see inequality in the lack of psychological support for those not yet at the stage of needing treatment, but who are living with the threat of the disease developing - we feel that no person should be readily dismissed straight after being given a very frightening, life-limiting diagnosis just because no treatment is needed at that point. 

  • We see it when MDS is described as ‘an old person’s disease’, when we speak to a lot of people diagnosed in their fifties and sixties who are still working, juggling families, elderly relatives and a busy schedule, and without the means to retire early. 

  • We see first-line treatments, readily available to MDS patients in other parts of the world, being denied to patients in the UK   

  • In the lack of investment into finding new treatments for MDS, despite an increasing call for it from forward-thinking and caring clinicians. 

 

MDS UK will continue to speak out, raise awareness, and push for change—because every patient deserves the best possible care, no matter their age, background or location.

 

Read the full NHS Ten Year Health Plan (171 pages) or the Executive summary

 

Click the image to read the full NHS Ten Year Plan (171 pages) or the Executive summary
"10-Year Health Plan for England – Fit for the Future"

What’s Next: The National Cancer Plan

 

We look forward now to the publication of the National Cancer Plan, and to seeing exactly how the NHS plans to improve diagnosis, treatments, quality of life and outcomes for those affected by rare cancers such as MDS.  We will continue to get MDS and CMML onto the agenda at every opportunity. 

 

Help us make a difference for people living with MDS. Please consider donating either a single amount or a small monthly donation by clicking the button below.

EHA 2025 Conference highlights

Written by

The European Haematology Association (EHA) Congress 2025 held its annual conference in Milan this June bringing together leading haematology researchers, clinicians, and patient advocates from across the globe. Although we couldn’t attend in person, we followed the sessions online that focused on Myelodysplastic Syndromes (MDS) and Chronic Myelomonocytic Leukaemia (CMML).

European Haematology Association (EHA) Conference 2025 in Milan – event banner

Key takeaways from EHA 2025: 

 

1 - Artifical intelligence used in blood cancer research and care 

An exciting development is the use of artificial intelligence (AI) in blood cancer research and care. AI will increasingly be used to: 
  • collect, analyse and track patient data 
  • help diagnose complex conditions like MDS, MPNs and CMML more quickly and accurately   
This will help design more targeted and individualised treatments, and illustrates how AI is an exciting step forward in research and drug development. 

 

 

2 - New treatments for MDS on the horizon 

There’s a strong appetite in the MDS community to find new treatments for patients.

 

  • Luspatercept, which has been a first-line treatment for a number of years in the US, Canada, and Europe, is already licensed in the UK for the treatment of certain MDS sub-types but is not yet funded by the NHS.  This is hugely frustrating – the reasons are multi-layered with several different organisations involved at various stages. Progress is being made, albeit slowly. 

 

  • However, more encouraging is the news that newer drugs like Imetelstat and Elritercept, which have shown good results in clinical trials, are now being fast-tracked for approval in Europe.  This will bring them a step closer to being available in the UK.  The need for more effective, accessible treatments for MDS remains urgent. We're committed to keeping this issue firmly on the UK blood cancer policy agenda.

 

In summary

There is a big push in the haematology community to develop new treatments for MDS, MPNs and AML.  With the help of AI, research is moving forward quickly in immunotherapy, genomics and in improving quality of life for patients - while a search for a cure continues. Encouragingly there are some promising new treatments already on the horizon. 

 

At MDS UK, amplifying the voice of MDS patients within the broader blood cancer community—both in the UK and internationally—is a key part of our mission.
We serve on the steering committee of the MDS Global Alliance, and are active members of the MDS Foundation, the UK Blood Cancer Alliance, and Cancer52. We will continue to advocate for, and wherever possible financially support, research into MDS and will keep pushing to ensure MDS patients in the UK benefit from the latest research and emerging therapies, both now and in the future.
Help us make a difference for people living with MDS. Please consider donating either a single amount or a small monthly donation by clicking the button below.

Christmas is coming! Order cards & add a Robin to our Memory Tree

Written by

Celebrate the season - and someone special - with MDS UK. This year you can.
  • Add a robin to our Memory Tree in honour of a loved one, or
  • Order our festive Christmas cards to spread awareness and joy.
Every robin and every card helps support people living with Myelodysplastic Syndromes (MDS).
Festive fir tree garland decorated for Christmas, symbolising the season of giving and connection.

MDS UK Memory Tree

Honour someone special or share a message of love and hope by adding a robin to our Memory Tree.

 
 

Order MDS UK Christmas Cards - Free for members!

Help raise awareness this festive season with our exclusive MDS UK Christmas cards. Each set includes 20 cards with envelopes.

 

To order, email info@mdspatientsupport.org.uk with your membership number, how many sets you’d like, and your postal address.
Cards are free for members while stocks last!

There’s no obligation to donate, but if you’d like to help with costs and postage, we’d be very grateful. Our suggested donation per pack is £10, though any amount is welcome. To donate, click the red button below to give securely through our fundraising platform.
Festive fir tree garland decorated for Christmas, symbolising the season of giving and connection.
Whether you add a robin or send a card, your kindness helps improve the lives of people affected by MDS this Christmas.
Thank you for your support.

Siblings Alistair and Caroline complete ultra challenges to raise funds for MDS UK

Written by

After months of increasing tiredness, shortness of breath, and frequent GP visits, Ali’s mum, Sue Ward, was diagnosed with Myelodysplastic Syndromes (MDS) in the summer of 2024.

Ali Ward smiling beside his mum, Sue Ward, who has MDS (Myelodysplastic Syndromes); both are wearing red MDS UK t-shirts.

Ali Ward and his mum Sue

Thanks to the vital support and advice from MDS UK, Sue was able to navigate this challenging diagnosis with more confidence.

Ali explained,

“MDS UK is a dedicated patient support charity. While major cancer charities focus on research, MDS UK provides crucial education and emotional support to patients after diagnosis. Mum has used the charity for support several times to navigate through these uncertain times, and I know she—and many others—will continue to turn to them for help in the future.”

Determined to support MDS patients and raise awareness, siblings Alistair Ward and Caroline Ward took on epic ultra challenges, raising over £5,200 for MDS UK in honour of Ali's mum Sue and others living with MDS and CMML.

Alistair led the way, tackling the gruelling South Downs 50 Ultra Challenge on 12 April 2025.

What is the South Downs Way 50 Ultra Challenge?

The South Downs Way 50, is an intense 50-mile ultra marathon along the iconic South Downs Way National Trail, starting in Worthing and finishing in Eastbourne. The route features six miles of chalk footpaths and bridleways before joining the South Downs Way at Chanctonbury Ring, covering the remaining 44 miles of the famous SDW100 course.

Intense training for the ultra challenge

Ali’s preparation involved early mornings, tough gym sessions, battling injuries, and training through harsh weather to get race-day ready. His training included demanding endurance races such as:

  • New Forest Marathon (27 miles) on 4 December: Elevation 1,788 ft — 3 hrs 42 mins
  • Hibernal Hills Ultra (34 miles) on 8 February: Elevation 4,633 ft — 5 hrs 13 mins

Race day success

On race day, Ali completed the South Downs 50 Ultra Challenge in an impressive 8 hours and 49 minutes, placing 44th overall — a remarkable achievement raising funds for MDS UK.

Ali shared some key moments from the race:

“Low point: Realising halfway through I needed to slow down to finish. I was far too hot in a base layer and the famous MDS t-shirt!”

“High point: Seeing my boys, wife, and mum — the real hero — with only 13 miles to go. I knew then I’d finish, even if it meant crawling.”

Thank You to Ali from MDS UK

MDS UK extends heartfelt thanks to Alistair Ward for his incredible dedication and efforts in taking on this ultra challenge to support patients living with MDS and CMML.

Caroline Ward completes the Jurassic Coast Ultra Challenge to support MDS UK

Inspired by her half-brother Alistair’s incredible ultra marathon, Caroline Ward took on the demanding Jurassic Coast Ultra Challenge 100k walk on May 17–18 to raise vital funds for MDS UK.

The Jurassic Coast Ultra Challenge route

Starting in historic Corfe Castle, the route descends to Swanage before winding through iconic landmarks including Lulworth Cove and Durdle Door. The course continues with rolling ups and downs to Weymouth at the halfway point, then past Portland Bill, Chesil Beach, and West Bay — made famous by the TV series Broadchurch — before finishing with a celebratory arrival in the vibrant town of Bridport.

Caroline, along with friends Camille, Sandra, and Fiona, completed the continuous 100K walk, day and night, conquering a challenging 2,300-meter climb along one of England’s most scenic trails.

Caroline took over Alistair’s JustGiving page to build on the incredible momentum he’d started for MDS UK. Reflecting on the challenge, she shared:

“The walk was a REALLY MASSIVE challenge for me and my friends. Although I love walking, the furthest I’d previously gone non-stop was 42K, so completing 100K was a huge personal milestone.”

She added:

“Thanks so much for reading and supporting our fundraising efforts — it really means a lot to us and to the MDS community.”

Incredible £5,282 fundraised for MDS UK Support

Together, Alistair, Caroline and friends Camille, Sandra and Fiona raised an incredible £5,282 for MDS UK, plus an extra £1,193.15 with Gift Aid.

We extend our heartfelt thanks to them all for their amazing commitment and generosity in helping patients and families affected by MDS and CMML.

Free donations by shopping