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A novel treatment for MDS patients in need of frequent blood transfusions

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MDS Patient Support

Research FOR Patients
-For an informed and empowered opinion-
Have you made your clinical paper accessible yet?

Imetelstat has achieved meaningful and durable transfusion independence in clinical trials

The innovative drug  Imetelstat has been trialed on patients with lower-risk MDS who are RBC (Red Blood Cells) transfusion dependent and have experienced relapse or not been helped by erythropoiesis-stimulating agent (ESA).

This group of patients does not have many treatment options at the moment.

In this press briefing, recorded at the 24th Congress of the European Hematology Association (EHA) 2019, held in Amsterdam, Netherlands, Pierre Fenaux of St Louis Hospital, Paris, France, presents data on the use of Imetelstat in lower risk myelodysplastic syndrome (MDS) patients.

How does Imetelstat work? The science behind it

Scientists have observed that patients with MDS have a high telomerase activity in their stem cells. Telomerase is a naturally occurring enzyme, and its activity prevents cells from dying. Telomerase is repressed in most normal cells, preventing uncontrolled proliferation. In cancer cells, however, this enzyme is active.

Imetelstat, is a "telomerase inhibitor" and targets cells with active telomerase.

The study has reported that Imetelstat shows efficacy to control the enzyme and it's safe to use. It also reports biomarker data for patients with low-risk MDS who are red blood cells transfusion dependent and who were relapsed/refractory to erythropoiesis-stimulating agents.

About the study

The study is a two-part phase II/III study.

The primary endpoint (the main result that is measured at the end of a study to see if a given treatment worked) was 8-week red blood cells transfusion independence rate.

Key secondary end points were:

  • 24-week red blood cells transfusion independence rate
  • transfusion independence duration
  • haematologic improvement-erythroid

Of 57 patients enrolled and treated (overall population), 38 were non-del(5q) and hypomethylating agent and lenalidomide naïve (subset population).

Encouraging results from phase II of the study

A Phase II trial is still early days in terms of clinical trials – to read more about how this trial progresses – see this page at ClinicalTrials.gov

  1. The 8- and 24-week red blood cells transfusion independence rate in the overall population were 37% and 23%, respectively, with a median transfusion independence duration of 65 weeks.
  2. In the subset population, 8- and 24-week red blood cells transfusion independence rates were 42% and 29%, respectively, with a median transfusion independence duration of 86 weeks.
  3. Eight-week transfusion independence rate was observed across all subgroups evaluated.
  4. Cytogenetic and mutational data revealed a reduction of the malignant clones, suggesting disease modification activity.
  5. The most common adverse events were cytopenias, typically reversible within 4 weeks.

In conclusion, Imetelstat treatment results in a meaningful, durable transfusion independence rate across a broad range of heavily transfused patients with Low-Risk MDS who are ineligible for or relapsed/refractory to erythropoiesis-stimulating agents. Biomarker analyses indicated effects on the mutant malignant clone.

Authors

David P. Steensma, MD1; Pierre Fenaux, MD, PhD2; Koen Van Eygen, MD3; Azra Raza, MD4; Valeria Santini, MD5; Ulrich Germing, MD, PhD6; Patricia Font, MD7; Maria Diez-Campelo, MD, PhD8; Sylvain Thepot, MD9; Edo Vellenga, MD, PhD10; Mrinal M. Patnaik, MBBS11; Jun Ho Jang, MD12; Helen Varsos, MS, RPh13; Jacqueline Bussolari, PhD13; Esther Rose, MD13; Laurie Sherman, RN14; Libo Sun, PhD14; Ying Wan, MD, PhD14; Souria Dougherty, BS, MBA14; Fei Huang, PhD14; Faye Feller, MD14; Aleksandra Rizo, MD, PhD14; and Uwe Platzbecker, MD15

1Dana-Farber Cancer Institute, Boston, MA
2Hôpital Saint-Louis, Université Paris Diderot, Paris, France
3Algemeen Ziekenhuis Groeninge, Kortrijk, Belgium
4Columbia University Medical Center, New York, NY
5MDS Unit, AOU Careggi-University of Florence, Florence, Italy
6Klinik für Hämatologie, Onkologie and Klinische lmmunologie, Universitätsklinik Düsseldorf, Heinrich-Heine-Universität, Düsseldorf, Germany
7Department of Hematology, Hospital General Universitario Gregorio Marañon, Madrid, Spain
8Hematology Department, The University Hospital of Salamanca, Salamanca, Spain
9CHU Angers, Angers, France
10Department of Hematology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands
11Division of Hematology, Department of Internal Medicine, Mayo Clinic, Rochester, MN
12Department of Hematology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Republic of Korea
13Janssen Research & Development, Raritan, NJ
14Geron Corporation, Menlo Park, CA
15Department of Hematology and Cell Therapy, University Clinic Leipzig, Leipzig, Germany

Trial to test existing drugs against rare blood cancer

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MDS Patient Support

Research FOR Patients
-For an informed and empowered opinion-
Have you made your clinical paper accessible yet?

Cooperation to support a new clinical trial for MDS

A new clinical trial for MDS has just been launched.

Designed by clinical experts, using existing (repurposed) drugs in a new way, with wide PPI (Patient and Public Involvement) input and feedback by MDS UK advocates and patients, funded via Bloodcancer UK.

This trial will test existing drugs against the rare blood cancer Myelodysplastic Syndrome to improve patients' outlook and health.

It is run by UoBbiosciences & Warwick Clinical Trials Unit.

Best practice and cooperation at all levels for research benefitting MDS patients.

By making a donation to MDS UK, you are also funding our time, for the work we conducted with patients, enabling the subsequent approval of this trial.

Full details:
https://www.birminghamhealthpartners.co.uk/trial-to-test-existing-drugs-against-rare-blood-cancer/

A clinical trial designed to test existing drugs in the treatment of a rare blood cancer has been launched at the Universities of Birmingham and Warwick.

Funded by Blood Cancer UK, the trial seeks to repurpose existing drugs to improve the outlook, health and quality of life for people with Myelodysplastic Syndrome (MDS), a condition in which the patient does not have enough healthy blood cells.

Called REPAIR-MDS (Repurposed drugs to improve haematological responses in Myelodysplastic Syndrome), the trial will test a number of treatments designed to improve the formation of healthy blood cells, reducing or reversing life-limiting deficiencies in red blood cells. The trial is expected to begin recruiting patients in May 2021.

Professor Chris Bunce, in the School of Biosciences at BHP founder-member the University of Birmingham, who led the application to Blood Cancer UK and whose research contributed to the design of the trial treatments, says: “REPAIR-MDS represents a significant turning point in UK medical research. It is the first ever UK randomised trial delivered in this neglected patient group, establishing the precedent for future trials in the UK and elsewhere.”

Professor Janet Dunn, Head of Cancer Trials at Warwick Clinical Trials Unit at the University of Warwick, says: “It’s an important trial for these patients as currently treatment options are limited. We are excited to be working closely with Birmingham and the patient groups, in particular Sophie Wintrich who is CEO from the MDS UK patient support group.”

Although rare, MDS is estimated to be more prevalent in older people, over 70 years old. There is currently no cure for the disease and treatment is usually chemotherapy-based, although in some cases a stem cell transplant may be possible.

Dr Fatima Sulaiman, Head of Research for Blood Cancer UK added: “Blood Cancer UK are really excited to be supporting this trial. We believe that within the next generation, we’ll be able to beat all types of blood cancer, and this trial will take us one step closer to doing this.

“Sadly, only 31% of people diagnosed with myelodysplastic syndrome (MDS) survive 5-years, and we urgently need better treatments. Being able to repurpose existing drugs for people with MDS would mean we would be able to get new treatments to people, sooner, giving everyone the best possible chance of survival.

“Anyone worried about blood cancer can call our free and confidential helpline on +44 (0) 808 2080 888.”

The project is a national effort by the UK MDS research community and will recruit patients from across the UK. The trial was developed by the National Cancer Research Institute (NCRI) MDS clinical studies sub-group and has arisen from research carried out in the School of Biosciences and the School of Medical and Dental Sciences at the University of Birmingham led by Professor Bunce. It will be carried out in collaboration with Queen Elizabeth Hospital Birmingham.

The funding of REPAIR-MDS by Blood Cancer UK has been made possible by a donation made in open competition to the charity from the Jon Moulton Charity Trust.

New animation to explain MDS to all

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Please help us support more patients!

Donate on MDS UK JustGiving Page

This ground-breaking animation aims to raise awareness of MDS (Myelodysplastic Syndromes) and create an accessible story for newly diagnosed patients and their loved ones, signpost them to help and support and raise funds for MDS UK.

Can you help us distribute this clip in hospitals waiting rooms?

Help us to help you and others: If your haematology waiting room has an internal TV system in place – please ask the Waiting Room Manager if this information cartoon could be featured on their TV ?

Ask the waiting room manager to contact us on

Email: admin1@mdspatientsupport.org.uk

Reference: MDS-Myelo’s Hope Infocartoon

Please help us fund MDS UK research work:

  • We would aim to use donations to help us cover the costs arising from our involvement in, and contribution to MDS-related research.
  • MDS UK staff, committee members and expert patients are involved all year round in different aspects of research, including addressing the issue of access to MDS treatments.
  • We regularly provide input to Patient and Public Information (PPI) work, for both commercial and non-commercial clinical trials. We are financially compensated for some of this work, but not all.
  • This wider research and access work takes time, effort and energy, and therefore needs funds.
  • Without this work, ethics boards would not approve trials, EMA and NICE processes would be delayed, and access to drugs might be compromised. And, above all, the voice, needs and wishes of patients would not be heard or considered.
  • Additionally, having funded one PhD research project (at Queen’s University, Belfast), we would like to consider funding more direct research, should our funds allow us to do so in future.
  • If you have found this topic of interest and would like to support us in such work, we would welcome any donations, however small. If you can, please use Gift Aid to enhance the value of your donation to us by 25%, at no additional cost to yourself.

Through our input to the European Medicines Agency (EMA), and National Institute of Clinical Health and Excellence (NICE),we have been heavily involved in work undertaken in order to make MDS drugs accessible to patients.

This type of work helps to ease and speed up the process of licensing of drugs, and their financial approval for use in the NHS.

Patient groups like us play an absolutely crucial role in this area, and can make the difference between a drug being accessible, or not.

Please help us support more patients!

Donate on MDS UK JustGiving Page

25th of October: MDS World Awareness Day 2020 – Take Part!

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MDS Patient Support

MDS World Awareness Day 2020: FACES OF MDS

It’s time to get your pens, brushes and camera out for MDS WAD on Sunday October 25th!

This is a crucial day for the worldwide MDS community to make a stand against this rare blood cancer and raise much needed awareness!

We would like to encourage as many people from MDS UK as possible to get involved, becoming part of a wider collective voice.

This year's theme from the MDS Alliance is "Faces of MDS", an education and awareness campaign involving sharing self-portraits and selfies with MDS facts.

Here's our first Face of MDS: the amazing Kate Darby!

MDS Patient Support

Here’s how to take part:

  • Take a look at the MDS Alliance website . Download and print out the handy templates, which include MDS facts.
  • Using these templates, you can draw a self-portrait or ask your children, grandchildren or friends to draw your portrait. You can also take a selfie using the MDS cut-out selfie template or with an MDS WAD fact sheet
  • Take photos of the drawings / selfies and post them and the selfies to Facebook, Twitter and Instagram using #FacesofMDS! and #MDSWAD2020.

You can also get involved without using social media.

Simply follow steps 1-2 above and then send your creations to secretariat@scientificeducationsupport.com following the instructions on the briefing guide (see below)

Go on, it’s time to become part of the collective voice and get involved with the easy to implement MDS WAD activities! 

We hope to see many of you involved!

MDSWAD sophie (1)

MDS Patient Support

MDSWAD russell

MDS Patient Support

IMG_0126 (1)

MDS Patient Support

MDSWAD chrisC

MDS Patient Support

25th of October is World Awareness Day

Help us raise public awareness on Myelodysplastic Syndromes!

Contact Jan

How have you coped over the past few months of COVID-19? Please let us know

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Patients and caregivers/supporters survey on care during the COVID-19 pandemic

MDS UK has teamed up with the NCRI MDS subgroup (National Cancer Research Institute), the UK MDS Forum (National MDS clinical experts group), and created a survey for MDS, CMML and AML patients and caregivers.

What does this survey cover?

This national survey is about

  • your perspective and experience of the COVID-19 pandemic generally
  • the clinical care and support you received
  • the information you had access to
  • treatment of COVID-19, if applicable

How will this data be used?

The data collected will inform clinical staff about any beneficial changes to practice they can take forward to improve the care of MDS and AML patients as well as understand what barriers and difficulties patients came across during this period.

We also hope to pass on some of this data to PHE (Public Health England), to also improve the way they provide information and services to patients and families.

We will publish results on our website as well, and use the information to improve our services to members too.

Confidentiality and GDPR

This survey is set up to be completed totally anonymously, in line with GDPR regulations for this type of work.

MDS UK members will be sent a link, but it will not be possible to trace back answers to individuals.

The link can only be used once per device.

Other surveys on COVID-19

You may have completed other surveys on the topic of Covid-19, for other organisations, but we kindly ask you to complete this one too, as it is the only survey fully dedicated to MDS, and prepared by the team of clinical experts in MDS and the NCRI sub-group on MDS.

Your MDS clinicians may also forward you a link to this particular survey.

It does not matter which link you end up using, as data will be collected together.

How long does it take to complete it?

It may take you up to 30minutes to answer all questions.

Some questions can be skipped.

We thank you for taking this time to provide these very important answers, to help us help you.

Technical Queries?

Please email admin1@mdspatientsupport.org.uk

MDS UK team

Many thanks to the clinical staff and MDS UK team involved in this survey:

NHS staff: Dr P Krishnamurthy, Dr S Killick, Nurses J Hayden and M Kenyon, Dr J Chadwick, Analyst A Jackson

MDS UK staff and volunteers: C Dugmore, C Richards, IT expert E Fuste, S Wintrich, C McGovern

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MDS Patient Support
MDS Patient Support

News for MDS patients from the European Registry

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MDS Patient Support

Research FOR Patients
-For an informed and empowered opinion-
Have you made your clinical paper accessible yet?

What is the European Myelodysplastic Syndromes Registry (EUMDS) project?

The best way to study a typical group of MDS patients is to set up a registry. A registry involves obtaining consent from patients and collect information about their MDS and the treatments they receive at their usual clinic or Day Case Unit visits.

The European MDS Registry (EUMDS), was initiated in 2008 by a large group of European haematologists. It contains information on treatment and disease of more than 2500 MDS patients from 17 countries and it continues to include new patients.

Many of you will be familiar with the EUMDS project and some of you are registered and actively sharing your MDS data, helping researchers to improve their understanding of the disease. This helps to shape better clinical trials, and ultimately may lead to better treatments for MDS.

Which scientific studies have been performed so far by the Registry?

The information collected in the EUMDS registry forms the basis for scientific studies. In these studies MDS experts seek to answer scientific questions on MDS and the treatments available. By answering these questions scientists aim to improve the diagnosis and treatment of MDS.

The results from EUMDS scientific studies are published in scientific journals and presented on large haematological congresses.

In addition, the EUMDS publishes summaries of these scientific studies for patients and the general public, in a patient friendly format. These are published on the "Lay English Summaries": https://eumds.org/publications/summaries

See, for example, two topics which have been published under "Lay English Summaries":

MDS Patient Support

The effect of transfusions on patients quality of life

Impact of red blood cell transfusion dose density on progression-free survival in lower-risk myelodysplastic syndromes patients.

Red blood cell transfusions (RBCT) are an important part of the general medical care for MDS patients. However, the overall life expectancy of patients treated with RBCT is often decreased compared to untransfused MDS patients. It is unclear whether this lower life expectancy is due to the nature of the disease (more severe illness and therefore greater need for transfusions) or whether it is due to unwanted side effects of the RBCT itself. We observed that even patients transfused with small quantities of blood transfusions have a negatively affected life expectancy. We are unsure what causes this negative association, and hypothesize that it could be related to the release of toxic iron radicals after transfusion. Future studies are needed to confirm these observations and in addition, it is necessary to perform dedicated intervention studies with the aim to overcome this negative effect.

MDS Patient Support

Ways to improve diagnosis and prognosis for new patients

Validation of the revised international prognostic scoring system (IPSS-R) in patients with lower-risk myelodysplastic syndromes: a report from the prospective European LeukaemiaNet MDS (EUMDS) registry

The Registry has been opened for a while, and in this timeframe the scientific community has upgraded the criteria which were used to calculate the prognosis of patients with MDS. These new criteria (IPSS-R) were validated on the first 1000 EUMDS patients who were characterized using the ‘’old’’ (IPSS) criteria. This study shows that using the new criteria, our risk assessment improved for the various MDS patient groups. Currently, both the old and the new criteria need to be reported by the physician for each patient who joins the Registry.

Visit the Lay English Summaries of articles published by the EUMDS Registry about the topics below

READ MORE PATIENT-FRIENDLY SUMMARIES

  • Early platelet count kinetics has prognostic value in lower-risk myelodysplastic syndromes
  • Health-related quality of life in lower-risk MDS patients compared with age- and sex-matched reference populations: a European LeukemiaNet study.
  • Labile Plasma Iron Levels Predict Survival In Patients With Lower-Risk Myelodysplastic Syndromes
  • Erythropoiesis-stimulating agents significantly delay the onset of a regular transfusion need in nontransfused patients with lower-risk myelodysplastic syndrome
  • Impact of treatment with iron chelation therapy in patients with lower-risk myelodysplastic syndromes participating in the European MDS registry

MDS-RIGHT

If you found the articles above of interest to you, please also read on about MDS Right.

MDS-RIGHT (Providing the right care to the right patient with MyeloDysplastic Syndrome at the right time) is a research project that has been granted 6 million Euros from the Horizon2020 programme of the European Union. In this project – which started in May 2015 and will end in 2020 - fifteen European partners have joined forces. By comparing existing health care interventions and by defining and implementing more effective and safer interventions for elderly European citizens with anaemia and/or lower-risk MDS, the project aims to lead to better treatment compliance and more (cost-)effective use of healthcare resources.

https://mds-europe.eu/right “

20for20 Gallery

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What have our wonderful participants been up to?

Welcome to MDS UK's #20for20 gallery! Here, you can have a look at what some of our wonderful participants have been up to in the campaign. Whether it be running, litter-picking, hula-hooping or poetry, our #20for20 fundraisers are doing amazingly well!

We hope this page inspires more people to join MDS UK in the #20for20 campaign or donate towards it! 

This gallery will be updated throughout the campaign.

[envira-gallery id="28694"]

MDS Patient Support
MDS Patient Support
MDS Patient Support

World Leukemia Day on 4th September

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Today, 4th September, together with the worldwide blood cancer community, MDS UK is marking World Leukaemia Day.

MDS Patient Support

MDS patients can be affected by leukaemia too:

10% of low-risk MDS cases do progress to Acute Myeloid Leukaemia

30% of high-risk MDS cases do progress to Acute Myeloid Leukaemia

In those MDS cases, it is then called secondary AML, as opposed to de novo AML, when someone is suddenly diagnosed with acute myeloid leukaemia.

To help raise awareness of leukaemia, you can get involved by taking spotty selfies, and sharing on social media.

Here is also some background on leukaemia, as well as a couple of videos, explaining some symptoms, which can be particularly relevant for our MDS community.

https://www.worldleukemiaday.org/what-is-leukemia-1

Take a spotty selfie:

Dig out your spotty clothes and share your ‘spotty selfie’ on social media with the hashtag #WLD20 on September 4th to show your support.

Facebook:

Show your support for World Leukemia Day by using our Facebook Frame. All you have to do is follow these easy steps…

  •  Go to your Facebook profile and click edit on your profile picture
  •  Click add frame
  •  Search for World Leukemia Day
  •  Select our Facebook frame
  •  Click Use as Profile Picture to save
  • And you’re done!

Tweet:

#WLD20 #WorldLeukemiaDay

We count on you to raise awareness in leukemia on 4th September !

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

Fever or night sweats?

Weak or short of breath?

Thanks for your support.

Stay vigilant, don’t hesitate to report symptoms.

Stay safe

MDS UK

Unique Stem Cell Transplants for Grandfather and Grandson

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Ted Peel and his grandson Roman

MDS UK Chairman, Ted Peel, and his grandson, Romain, are set to receive stem cell transplants within weeks of each other.

Their generosity in sharing their moving story is doing wonders to raise awareness on MDS, encourage people to become stem cell donors and generate essential financial support for MDS UK and Teenage Cancer Trust.

On 20/08/2020 our article was published on the Metro, the highest-circulation print newspaper in the UK!
Click here to read the Metro story

Ted: “It’s great to be given another chance at life”

Ex-lawyer Ted was diagnosed with MDS in 2015 following extreme fatigue, regular coughing up and passing of blood and several bone marrow biopsies.

“Following an unsuccessful period of G_CSF to remedy low a white blood cell count, I was hospitalised three times with sepsis where my temperature plummeted to 32C”, says Ted.

“Fortunately, I found considerable support and knowledge within the MDS Patient Support Group, a charity supporting patients and carers.”

MDS (Myelodysplastic Syndromes) is a group of malignant blood disorders in which the bone marrow fails to produce healthy blood cells. All types of blood cells can be affected, causing a range of symptoms, anaemia and frequent infections being amongst the most common ones. Ted was prescribed prophylaxis antibiotics to prevent further infections, but they continued including some in his mouth, triggering hospital admissions and weight loss.

“My transplant treatment scheduled for this spring was sadly postponed as it was deemed too unsafe for me to be admitted to the hospital due to Covid19”, says Ted.

Fortunately, he was told in July that he would be admitted promptly for the treatment at Kings College Hospital as cases of Covid19 in London have decreased.

“It’s great to be given another chance at life”, says Ted. “I want to say thank to MDS UK and the doctors and nurses in the Haematology Dept. of the hospital for their support."

Romain's Story

Romain began experiencing migraine headaches and fatigue while studying for A Levels and was prescribed pain medication in the belief that exam stress was the cause.

After a prolonged period of deterioration and persistence by his Mother and Grandmother, he was finally diagnosed with Acute Lymphoblastic Leukaemia (ALL) in September 2019.

Romain 18th birthday

Romain: “Although my specific mutation complicates my treatment, I was really interested in the genetics behind it”

Further tests found that he also had the Philadelphia malignancy (Ph+) - an abnormality of chromosome 22, where a piece of chromosome 9 and chromosome 22 break off and attach.

“Although my specific mutation complicates my treatment, I was really interested in the genetics behind it”, says Romain. “I’ve learnt a lot going through my diagnosis and treatment.”

In paediatric patients with ALL, the Philadelphia malignancy is uncommon and very high risk, with only 20%-30% of people being cured by chemotherapy alone.

Indeed, six months of systematic chemotherapy failed to cure Romain, who was informed that he needed a stem cell transplant.

“It was a scary situation, but I was mentally prepared for it” says Romain. “I’m aware that most Ph+ cases result in a transplant to prevent relapse scenarios.”

Fortunately, Romain’s 16-year-old sister Sidonie was a 12/12 match and donated some of her stem cells to be transfused to her brother. Romain is currently starting his transplant journey at The Royal Marsden Hospital.

“There’s many possible dangers, yet again I found myself interested in the science”, says Romain. “The genetic implications of being a chimera are fascinating! I can’t wait to be allowed out with my mates again!”

How to donate bone marrow

If you’re between 16 – 30 and in good health, sign up to Anthony Nolan's register and you could be a lifesaving match for someone with blood cancer

Donate Stem Cells

You Can Become a Donor!

Even if you’re older than 30 you can become a blood donor if you're in good health. Check your eligibility at the dkms site

Are you eligible?

Familial blood cancers

With Ted, Romain and, previously, Ted’s Grandfather suffering from forms of blood cancer, their stories link to the wider issue of whether the diseases can be inherited.

In June 2019’s MDS UK newsletter, Professors Jude Fitzgibbon, Tom Vulliamy and Inderjeet Dokal of Queen Mary University of London considered familial MDS: https://mdspatientsupport.org.uk/wp-content/uploads/2019/08/20266-MDS-Newsletter-Jun2019-v10.pdf (page 7).

They found the phenomenon to be rare but claim that many genes have been identified that are responsible for an inherited predisposition to MDS.

Their research has highlighted the importance of making specific modifications to therapy to achieve optimal outcomes and greater awareness among haematologists, enabling more tailored management of at-risk individuals.

To learn more about it, watch this video about familial MDS.

Appeal: MDS UK Support Group and Teenage Cancer Trust need your help today

“However, more support is necessary, and we want our combined journeys help to generate essential funds for our respective favourite charities- MDS UK Patient Support Group and Teenage Cancer Trust”, says Ted.

MDS UK provides an array of support for MDS patients and recently funded its first research project, aiming at repairing damaged DNA in blood cancer. This would have positive implications for all blood cancers.

“Teenage Cancer Trust’s special hospital wards, nurses and youth support teams provide patients with emotional and practical support to get them and their families through some unimaginably hard times”, says Helen Farquharson, Senior Fundraising Manage at TCT.

“Romain is currently on a Teenage Cancer Trust ward” says Christine Peel, Romain’s Grandmother. “As well as supporting Romain, the charity’s staff there have been helpful, giving his Mum information, advice and directing her to support services. Their support has been invaluable.”

Both organisations need more financial support to ensure other patients have an easier time, especially during Covid19, which has seen the demand for services increase.

“We also urge more people to become stem cell donors, especially those from ethnic minority communities”, says Ted. “We would like to see a future where every blood cancer patient has a donor available and where cost is not an inhibiting factor."

It is only with this generous and selfless support that the care and treatments for blood cancer patients continue to be provided and improved.

MDS UK and Teenage Cancer Trust would like to wish both Grandfather and Grandson a safe and smooth procedure and speedy recovery and say a massive thank you for sharing their stories!

To donate to MDS UK and Teenage Cancer Trust, visit the campaign VirginMoneyGiving page on: https://uk.virginmoneygiving.com/TedRomain

For queries about MDS, familial MDS, or general enquiries, email info@mdspatientsupport.org.uk or call 020 7733 7558.

You find other ways to donate on our website: https://mdspatientsupport.org.uk/fund-raising-2/donate/

For more information on Teenage Cancer Trust and to donate, go to: https://www.teenagecancertrust.org/

To read Ted and Romain's full story go to: Ted and Romain: The full story

If you are interested in fundraising for MDS UK or have any related queries, contact us on fundraising@mdspatientsupport.org.uk

Connor, Ben, Joe and Jeff will walk the 37 miles from Ashford to Ramsgate!

Connor Stalker and Ben, Joe and Jeff Watson will be walking 37 miles from Ashford to Ramsgate to raise vital funds for MDS UK!
Gardener Connor, who is just 23, met our Chair Ted Peel and his wife Christine when attending to their garden.

After befriending the couple and hearing about Ted’s struggles with MDS, Connor was struck by how the disease affects patients and their loved ones.

He showed his three friends MDS UK’s information booklet and they decided to turn their planned walk into a fundraiser for our cause.

Starting at 7:30am, they aim to reach Ramsgate by 17:30- a 10 ½ hour walk. Between them, they hope to raise a massive £1000 for our life-changing work!

“I believe every life matters and I’m tired of seeing people pass away too soon. I want to give something back as Christine and Ted are good friends of mine.

I just want to do something. I want people to realise that everyone has their own struggles and to make the most of what you’ve got because it can change so quickly.

I always try to keep smiling, help people along the way and treat others as I want to be treated.

If I can save even a few people, then that would mean something to me.”

Fiona Christie

Connor and his friends need your help! With the donations of generous supporters, their target can easily be reached and surpassed.

Please go to the event JustGiving page on https://www.justgiving.com/fundraising/connor-stalker to donate as much as you possibly can!

Thank you so much, Connor and friends, for deciding to help us in this way! You’re amazing!

Individual events like this are essential at a time where most of our fundraising events have been cancelled due to Covid19.

If you have a similar fundraising idea and would like to discuss it, please contact us on fundraising@mdspatientsupport.org.uk.

New! MDS UK online meetings for patients and carers

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It doesn't seem likely that we shall be able to resume face-to-face meetings for a while yet. But we are keen to maintain our services to you, and provide you with all the regular news about MDS, as well as giving you an opportunity to connect to one another virtually.

We know how important patient to patient contact is for everyone.

Hence, we've started organising Zoom meetings for the last couple of weeks. Feedback has been very positive and we were able to resume local group activities, as well as holding nationwide meetings on specific topics.

Join our Online Zoom Meetings

Check the calendar

Upcoming meetings

On the 22nd of July, we had a very informative nationwide meeting on Clinical Trials and Research in MDS & AML During CoVid. Our Guest Speaker was Dr Austin Kulasekararaj, Consultant Haematologist at King's College Hospital.

Forty people attended the meeting, and Dr Kulasekararaj gave an introduction to the subject, tailored to the audience, and addressed patient's questions.

MDS Patient Support

Whatever happens during and after the COVID-19 pandemic, we aim to maintain some virtual meetings, as it has attracted new members, who had not attending face to face meetings previously.

Many patients have already embraced the video meeting call technology Zoom (or something similar) in order to stay in touch with family members during the lockdown.

If you haven't, please contact us. Please also see our guidance on how to use Zoom. If you are a first time user of video call – please don’t worry. The first 15 minutes of each meeting will be set aside to sort out any technical issues.

If you have not contacted the MDS UK Patient Support Group before and would like to receive a full Patient Information Pack, please contact our Main Office.

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