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

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.


New PyramIDH clinical trial for MDS with IDH1-mutation now recruiting in the UK

New PyramIDH clinical trial for MDS with IDH1-mutation now recruiting in the UK

About the PyramIDH trial

PyramIDH is the name of a randomised clinical study designed to measure the efficacy of Ivosidenib, an oral inhibitor which specifically targets the gene mutation IDH1, compared with the commonly used hypomethylating agent (HMA) Azacitidine (often referred to as Aza).   

 

Why this study matters

Following promising results from phase 2 of the study, which showed a 72% overall response rate for Ivosidenib (as a monotherapy, or single treatment) in patients with previously untreated  IDH1-mutant MDS,  the aim of this third phase is to further validate the findings by testing a wider cohort of patients.   

 

Trial design

The trial managers are looking to recruit approximately 48 MDS patients with the IDH-1 mutation who have not previously been treated with hypomethylating agents.  They will be split randomly into two groups, with the patients in one group to be treated with Ivosidenib and the other group Azacitidine.   

 

Who can take part?

You may be eligible if:
  • You are 18 or older and have been diagnosed with MDS with the genetic mutation IDH-1
  • You have not yet been treated with hypomethylating agents
  • You live within reasonable travelling distance of one of the trial centres listed below
If you meet these criteria and would like to be considered for the trial please ask your consultant for further details.  

 

UK trial sites and contacts

  • Churchill Hospital, Oxford – Contact: Dr Connor Sweeney
  • King’s College Hospital, London – Contact: Dr Lynn Quek
  • University College Hospital, London - Dr Rob Sellar
  • Western General Hospital, Edinburgh – Contact: Dr Victoria Campbell
  • Torbay Hospital, Torbay – Contact: Dr Zhao Rui
  • St James’s Hospital, Leeds – Contact: Dr Catherine Cargo

MDS Foundation Congress 2025: Key developments in Myelodysplastic Syndromes research

MDS Foundation Congress 2025: Key Updates in Myelodysplastic Syndromes Research

MDS UK sponsors Dr Shoshana Burke at 2025 MDS Congress

MDS UK were delighted to sponsor Clinical Research Fellow and Barts NHS Trust Clinician Dr Shoshana Burke to attend the 2025 MDS Congress in Rotterdam

Organised by the MDS Foundation, the event brought together MDS specialists and researchers from across the world to share the latest developments in treatment, research, and patient care. Dr Burke described the experience as “intense and exhilarating,” and we’re pleased to share the key updates from her report.

Dr Shoshana Burke is a Clinical Research Fellow in Dr Rouault-Pierre’s laboratory and a clinician at the Barts Health NHS Trust.

 

Dr Shoshana Burke is a Clinical Research Fellow in Dr Rouault-Pierre’s laboratory and a clinician at the Barts Health NHS Trust.

 

Key insights from Dr Shoshana Burke’s report on the 2025 MDS Congress

"Patients can be assured that MDS researchers all know their quality of life is paramount."— Dr Shoshana Burke, May 2025

 

  • Reducing transfusions is a major area of research. In MDS, staying independent of transfusions for as long as possible is key in maintaining a good quality of life. The level of transfusion dependency informs outcome, ie the fewer transfusions, the better their quality of life, and the more improved the prognosis.

 

  • Reducing Inflammation. As a dominant pathway in MDS, and in the risk of progression to AML, inflammation is a popular target for research, which includes looking at Metformin (common treatment for diabetes) as a treatment for cancers, including MDS.

 

  • Luspatercept and Imetelstat.  Both continue to show impressive results in reducing transfusion dependency, which should help obtain approval by the NHS. (Luspatercept is licensed in the UK but not yet available on the NHS, Imetelstat has just had European approval). Trials in combining ESAs (such as Epothrypoetin/EPO) with these two treatments are underway, and the signs are encouraging so far.

 

  • Methylation (modifies gene expression).  This is increased in MDS and therefore a major target for research/treatments. Hypomethylating agents are showing positive results in trials, focusing on lower-risk MDS and potentially widening the scope for transplants.

 

  • Vitamin C. Danish studies into the use of Vitamin C in MDS are very encouraging.

 

  • More ‘prospective’ trials are being called for, aimed at low-risk and non-transfusion-dependent MDS, and into treatments which target specific gene mutations.

 

  • What this means for MDS patients.   This year’s congress brought encouraging news for patients and families affected by MDS. From reducing transfusion reliance to targeting inflammation and gene expression, the field is moving toward more effective and personalised care.  We will be focusing on all these topics over the next few months and will bring you further news on our website and newsletters.

Thank you!

Huge thanks to Dr Burke for taking time out from a busy schedule (which includes being part of the clinical team researching Vitamin B5 and MDS ) to represent UK MDS patients and report back. If you want to find out more about the Vitamin B5 study you can watch the full video presentation here.

If you would like to help us fund more research like this please consider donating either a single amount or a small monthly donation by clicking the button below.


New CEO of MDS UK Patient Support Group 

The Trustees of MDS UK are delighted to announce the appointment of Blossom Bell as Chief Executive Officer, effective 1st May 2025.

Blossom succeeds Debbie Hickman, who has served as Acting CEO for the past two years and will remain involved with the charity on a part-time basis, continuing to contribute her invaluable knowledge and experience.

Blossom brings a unique and deeply personal perspective to the role.

She has been actively involved with MDS UK for several years, most recently serving as the charity’s Support and Research Lead, where she played a key role in patient advocacy and support initiatives.

Her commitment to the cause is rooted in personal experience—Blossom was diagnosed with MDS as a child and underwent a successful stem cell transplant, an experience that shaped her lifelong passion for patient care and health equity.

 

Blossom Bell - CEO of MDS UK Patient Support Group

Blossom Bell - CEO of MDS UK Patient Support Group

Blossom’s professional background spans a wide range of disciplines. Prior to entering the health sector, she held a leadership role in the nautical sector, overseeing operations and logistics in high-pressure environments. Her transition into healthcare was driven by her desire to improve the patient journey for others facing life-threatening conditions. She went on to earn a master’s degree in health psychology and has spent the last four years researching the psychological and clinical challenges faced by patients following stem cell transplantation, as published in the Journal of Cancer Survivorship and the Journal of Patient Experience.

 

Commenting on her new role, Blossom said:

“It’s an honour to be appointed CEO of MDS UK, an organisation that has been so instrumental in my own journey. I’m passionate about ensuring that all MDS patients—no matter their age, background, or prognosis—feel heard, supported, and empowered. I look forward to building on the incredible foundation laid by Debbie and the team, and to working collaboratively with patients, families, clinicians, and researchers to drive forward meaningful change.”

 

Chair of the Board of Trustees, Tony Allen, added:

“I am thrilled to welcome Blossom as our new CEO to lead us into the next chapter of our story of supporting those affected by MDS and CMML. The trustees will ensure that Blossom has the necessary support to enable her to achieve her ambition for the charity.
The Trustees would also like to express their heartfelt gratitude to Debbie Hickman, whose dedication and leadership over the past few years has been instrumental in strengthening the charity’s services and outreach. Her continued involvement ensures a smooth transition and provides ongoing strategic support”.

 

As Blossom takes the helm, MDS UK remains committed to its mission: providing information, support, and advocacy for all those affected by MDS and CMML.

 


Join the Blood Cancer PPIE Group – Cancer Research UK Cambridge

The Cancer Research UK Cambridge Centre are looking for new members to join their Blood Cancer PPIE Group. If you're 18 or over with experience of blood cancer as a patient or carer (including friends and family), please do enquire. You can click on the poster below and fill out an online form, or email ppie@haem.cancer.cam.ac.uk

Your experience and perspective matter. By joining the Patient and Public Involvement Group, you’ll help shape the future of blood cancer research and patient care.

  • Low time commitment – Only one main meeting per year, plus occasional smaller sessions.
  • Online or in person – Meetings take place online or in Cambridge (with travel expenses covered).
  • Simple registration – It takes just 10 minutes, and a PPI Group Lead will follow up with a friendly chat.

Thank you for your support in this vital work. Questions? Email ppie@haem.cancer.cam.ac.uk.

Click the poster below to fill out the form and get started.

Connect with 1,000+ members affected by MDS & CMML for peer support, shared experiences, and a safe space to ask questions.


Could Vitamin B5 help alleviate anaemia in MDS Patients?

In 2023, Dr. Kevin Rouault-Pierre (Barts Cancer Institute, Queen Mary University of London) and his research team published a study in Science Translational Medicine, highlighting the potential of Vitamin B5 to boost red blood cell production in MDS patients. While the initial research was laboratory-based, the next phase will focus on patients. MDS UK is delighted to be funding this phase, which is the development of an assay (a range of tests) to measure Vitamin B5 (pantothenic acid) levels in patients.

The recording below features a March 18, 2025, presentation to MDS UK members by Dr. Onima Chowdhury, Dr. Rouault-Pierre, and their team discussing this study.

Watch: A recorded presentation about the Vitamin B5 study

As well as providing the funding for this exciting study, MDS UK will be helping facilitate the trial’s PPIE requirement (Public and Patient Involvement and Engagement).

Further to this, Dr Kevin Rouault-Pierre, in collaboration with Dr Onima Chowdhury from Oxford University Hospitals, and supported by MDS UK, are preparing an application to fund a full, UK-wide, clinical trial. This is sponsored by Birmingham University Cancer Research Clinical Trials Unit, with the aim of applying to fund the clinical trial in 2025 and will get underway in early Spring 2025. 

The Vitamin B5 Study Team


MDS Patient Support

Dr Kevin Rouault-Pierre is group leader and a Reader in Stem Cell Biology and Diseases at the Barts Cancer Institute, Queen Mary University of London. 

MDS Patient Support

Dr Shoshana Burke is a Clinical Research Fellow in Dr Rouault-Pierre’s laboratory and a clinician at the Barts Health NHS Trust.

MDS Patient Support

Dr Onima Chowdhury is a consultant haematologist in the Haematology department at Oxford University Hospitals where she looks after patients with myeloid malignancies. She is also a clinical lead in the diagnostics laboratory.

For more information 


 

 

If you would like to help us fund more research and trials like this please consider donating either a single amount or a small monthly donation by clicking the button below.

MDS Patient Support
MDS Patient Support
MDS Patient Support
MDS Patient Support
MDS Patient Support

Share Your Story: Covid – Five Years On

MDS Patient Support

Five Years On: share your lockdown stories! 

It’s hard to believe it’s five years since Boris Johnson appeared on TV telling us “you must stay at home”, and the UK, along with much of the world, was put into lockdown.  Most of us had little idea at that point how our lives would play out over the coming months, while the world shifted in ways we could never have anticipated.  We shielded the clinically-vulnerable, fashioned PPE out of bin bags and masks out of duvet covers, home-schooled our kids and created offices in kitchen cubbyholes.  We took socially-distanced walks, banged saucepans for key workers, attended appointments in near-deserted hospitals, and gagged on those horrible throat swabs.  Yet many also found time for peace and reflection, to take a step back from busy lives and re-evaluate their priorities. 

We want to hear your story... 

What are your memories of life under lockdown?  We’d love to read them, and to share them here (with your permission of course). 

Send them to us at info@mdspatientsupport.org.uk, with ‘Five years on’ in the subject line. 

Anything between 100 and 500 words is fine.  Photos welcome too!  We’ll start the ball rolling with a few of ours. 

We look forward to hearing from you!


New therapies & advancements for low-risk MDS by consultant haematologist Dr. Beth Payne

 

Dr Beth Payne is a consultant haematologist at University College London Hospital and an associate professor at University College London, who specialises in the treatment of MDS and bone marrow failure. The recording below is a of a Zoom presentation she gave to the MDS UK Support Group on March 5th 2025 on ' New therapies and advancements in treating low-risk Myelodysplastic Syndromes (MDS) to improve patient outcomes'.

Watch: Dr. Beth Payne’s presentation, "New Therapies & Advancements for Low-Risk MDS,"

Dr. Beth Payne, consultant haematologist at UCLH

MDS Patient Support

Dr Beth Payne specialises in the treatment of MDS and bone marrow failure. She undertook her PhD at the Dana-Farber Cancer Institute, Harvard Medical School in Boston USA, studying molecular aspects of MDS and AML and ribosomal protein mediated disorders. She was awarded an Advanced Clinician Scientist Fellowship by Cancer Research UK. 


Get your Will written for free this March!

MDS UK Free Wills Month 2025
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.

MDS UK free Will writing service


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.


If you have any questions

If you'd like to talk to us or have any questions relating to leaving a gift in your Will please contact our Fundraising Officer, Ashleigh Venables, by email at fundraising@mdspatientsupport.org.uk

Alternatively you can call us on 020 7733 7558


Cancer 52 alliance releases ‘State of the Nation’ report on rare and less common cancers

Cancer 52 State of the Nation report 2025

What is Cancer52?

Cancer52 is an alliance of over 115 patient charities that advocate for people with rare and less common cancers in the UK. Their goal is to improve diagnosis, treatment, and support for people affected by these cancers.  MDS UK is delighted to represent all those affected by MDS and CMML as active members of the Cancer 52 alliance.

 

New report on Rare and Less Common Cancers 

The alliance released a report on Tuesday, 4th February, World Cancer Day 2025, called 'State of the Nation report on Rare and Less Common Cancers: Learning from patients and partners.'

 

Click on the image to download the report

Key priorities in the report

Key priorities outlined in the report include the need to:

  • Reduce deaths by tackling health inequalities,
  • Drive earlier diagnosis of rare and less common cancers,
  • Create a new national taskforce with patient involvement at its core

The report also draws on insights from Cancer52's patient survey, highlighting the broader impact of rare cancers, the importance of early diagnosis, and patients’ experiences of care and support.

More information

  • Find out more about Cancer 52 and the work the the alliance does from the Cancer 52 website