MDS UK wishes for a healthy, safe Christmas and a much improved 2021!

Dear MDS UK members,

We hope you have been coping as best as possible during this very difficult year for everyone.

From the many phone calls and emails we have received since March 2020, we know how worried you have been about Covid-19. At the height of the pandemic, our phone line was open 24/7 and the phone was indeed ringing all day.  We hope we have been able to assist you in some way.

Many of you have been feeling even more isolated than ever before. You have had issues about access to your GP. Thankfully, our Covid-19 MDS survey shows that most haematology departments managed to maintain good care services, thanks to amazing staff.

As a small charity, we have tried to do our best, in very difficult circumstances, with all 4 staff members working from home, in the midst of growing financial concerns, due to the cancellation of all of our fundraising events.

We had some fantastic achievements despite these difficulties, and have experienced true silver linings, thanks to all of you, the NHS staff, our committee members, our coordinators and our own staff.

For instance, we have been amazed at the creativity of many of you, our members, taking part in the 20for20 fundraising campaign – and the incredible generosity of donors.

This campaign managed to raise just over £40,000 for the charity.  These funds have been an absolute  lifesaver, as our financial reserves have dangerously dwindled this year, causing us serious concerns for the future.

Despite these hurdles, we have managed to keep going.

Information to members

We have worked closely with all MDS experts, to provide up to date information regarding NHS haematology services, treatment recommendations, MDS clinical trial news and now guidance about the upcoming Covid-19 vaccine.

We have responded to a record number of new membership requests and phone calls. I had great phone calls with so many of you. Another silver lining, as we got to know each other even better.

We know we sometimes struggled to respond to the many phone calls and emails.

So, thank you for your patience in those circumstances.

Together with so many of you, we embraced online technologies, and set up virtual zoom meetings, enabling patients to speak and see one another, as well as get access to Q&A sessions with experts.

That has been the other significant silver lining! So many of you reported how enjoyable and welcome these meetings have been. We have seen so many new faces too – a real joy and relief from this COVID-19 isolation.

Research and access to treatment

We co-worked on two MDS clinical trials. One (Repair-MDS) will start recruitment in early 2021.

It is a particularly exciting trial, as it uses ‘repurposed drugs’, meaning it will use existing drugs with a different purpose (MDS), and will therefore be much cheaper to use, if the trial is successful of course.

For the other trial – we are waiting to heart whether it will be approved. That trial aims to improve the diagnosis and care of fungal infections in haematology patients.

Re access to treatment, we have campaigned tirelessly with our international colleagues, to gain early access to the new MDS drug Luspatercept, designed to help transfusion dependent patients diagnosed with the RARS MDS sub-type. Unfortunately, the pharmaceutical company has still not given any indication of when they may submit their approval request to NICE, nor have they agreed to any compassionate use of the drug.  We have been promised more information on this topic in January 2021.

Let’s hope this promise is kept!

The PhD project at Belfast University Hospital, which we are funding, thanks to 3 major legacies, is progressing nicely. We will provide an update in January, which will mark the end of the 1st year of work. Three more years to go till results!

For awareness of MDS

We will share our new MDS awareness cartoon ‘Myelo’s Hope’ more widely and ask more hospitals to share it on TV’s in their waiting rooms.  If you have the opportunity, be an MDS Ambassador and please speak to your haematology staff about it. Share how much MDS UK is helping you, so that future MDS patients don’t have to trawl the internet looking for information.

We worked lots more on the international scene too, as part of the MDS Alliance, contributing to European projects like Harmony and EuroBloodNet, which aim to improve treatment and care for several  blood diseases, MDS included.

In 2021

We have prepared more online meetings, with more people, more locations, more speakers, due to popular demand.

We also aim to restore the paper newsletter, which has much suffered during this Covid year.

We’ll report on the first results of the MDS – Covid-19 survey, which over 300 of you completed in the last few months. Thank you so much!!!!

We’ll keep reporting on and assisting with information on the new vaccines which may get approved by early 2021. We also hope to provide more news on efficacy in blood cancer patients, thanks to the wonderful team of MDS experts we work with closely.

I take this opportunity to thank all of them. From our own official scientific advisors, Dr Dominic Culligan, Prof Bowen and Dr Austin.

All of the UK MDS Forum team of experts are phenomenal in their willingness to support us and their readiness to supply advice and information.

A very special thank you to Dr Simone Green, who works on the MDS clinical trials news page – so essential to patients and general haematologists alike.

We leave you with a few words from some of our MDS UK committee members and staff, whom you had the chance to meet during some zoom meetings this year.

Greetings Everyone in our MDS Community!

This last year has certainly tested the resolve and strength of all those suffering with MDS and their carers. Despite the new Covid vaccine, it would seem that the pandemic is going to remain with us for some time to come. MDS-UK staff, our Central Committee and our many supporters have responded magnificently to the issue of support and fundraising during these troubled times.  I want to say thank you to all those involved in enabling us to continue our support and service provision to our MDS Family, as well as our clinical research. Our targeted Zoom meetings have been one positive outcome, proved popular and have helped to reach some of those who would not normally have attended traditional meetings. Obviously, as the pandemic evolves we must continue to think of new, innovative ways to fund our Charity and I would ask everyone to consider possible alternative future fundraising ideas.

I know many of you have been experiencing difficult journeys with your respective MDS and, sadly, some have departed this life during the year. To those grieving, we remain here for you and to those who have recently started their MDS journeys, I wish you every success with your various treatments. I have undergone a stem cell transplant during lock-down and I am on a journey of recovery and look forward to once again fully participating in the management of MDS-UK in 2021.

2020 has been a difficult year for all, however, I wish you the best Christmas possible and a better and safer 2021.

Best Wishes

Ted Peel, MDS UK Chair

2020 has been a very difficult year for us all, but particularly for extremely vulnerable MDS patients who have had to deal with threat of COVID and the disruption to lifestyles resulting from the response to this threat.
However, as in all bad times, there are lots of good things ongoing in the background. The COVID vaccine is top of the list and will be a crucial part of the way forward for most MDS patients. The superb work of MDSUK in supporting patients through these times has been inspirational and we must thank Sophie and all her colleagues for this invaluable work.
From the medical point of view research has continued to take small steps forward in improving the treatment and outlook for patients with MDS. Sophie rightly highlights luspatercept, which is an important new therapy for some anaemic patients with MDS with ring sideroblasts.
I would also like to highlight the funding of the REPAIR MDS trial, which hopefully will start recruiting patients during 2021. Having been involved with the NCRI MDS Clinical Trials Group since its inception many years ago it is heartening to see a major randomised trial, which will be accessible across much of the UK, come close to fruition after more than four years of planning. Hats off especially to the team in Birmingham and also to colleagues on the NCRI MDS Clinical Trials Group for this sterling effort.
I would like to wish you all the very best for Christmas and for a better 2021.

Dominic Culligan
Scientific Advisor, MDS UK

2020 has been a watershed year for our charity. Despite the challenges set before us we have managed, somehow, almost miraculously, to ensure that we still have some level of fundraising. I would like to take the opportunity to thank all of our supporters, our patients, and the families and carers of those patients for their most tremendous endeavours this year. We can't have done it without you. Next year brings new challenges and this Christmas will not be without some concerns, so my New Year wish would be that the charity becomes ever more active and encourages even more people to become involved with us.
Merry Christmas and a happy New Year

Russell, Head of Fundraising and Deputy Chair

"During my lifetime I’ve had a few dodgy years. Never in my wildest dreams did I imagine collectively we would all go through so much in 2020. I was diagnosed with MDS 20 years ago. I’ve looked after my health and protected myself ever since. What’s hard about the pandemic is that those of us with wonky immune systems are now reliant on everyone else doing the right thing.

I have been impressed by all the changes that haematology departments have made to keep patients safe.  I’ve represented patients in discussions about these changes and will continue to be a strong advocate for our MDS community."

Hope this is ok. Keep safe everyone and I hope you all have a happy and healthy Christmas.

Take care, Kes

Love is what’s with you in the room at Christmas if you stop opening your presents and listen.

Our online Support Group Meetings have been a great way for everyone to meet this year. We have been lucky enough to have wonderful Doctors, Consultants and CNS Nurses join many of these meetings. For anyone who has never joined a zoom call or a local meeting in previous years you really must join in 2021. I have had the joy of laughing with so many of you, over this very strange, and isolating year. I would like to say a huge Thank You

Wishing everyone a Merry Christmas and a healthy and happy 2021.

Caroline, Office & Database Manager

I'd like to say a huge thank you to everyone at MDS UK for making me feel so welcome in my first 9 months here! It's been a challenging year to say the least but it's been great getting to know many of you so far and your inspirational stories spur me on!
There's too many great individuals to mention so another big thank you to everyone who has fundraised / donated to MDS UK this year.
With many of our biggest events cancelled or postponed, the determination of you all to help keep our work going is remarkable!

Wishing you all a merry Christmas and (hopefully) a better and less stressful new year! Looking forward to speaking to more of you in the months to come!

Jan Edwards, Fundraising Officer

My A-Z of 2020!

Absence -it really does make the heart grow fonder when you cannot see family and friends

Berries -of all kinds from our allotment

Coronavirus -the frightening cause of it all

Depression -finding strategies to avoid feeling low and Deaths -too many unnecessary ones.

Energy -newfound in the Spring, sowing seeds for garden and allotment

Fundraising -and Focusing on something positive

Grandchildren -oh, how we’ve missed them.....

Holding their hands, hugging and just hanging out with them

Information - so much to absorb

Judging friends on their COVID behaviour and attitudes (!)

Kicking a ball with grandchildren in the garden when allowed in the summer

Loving my husband so much for shielding and protecting me by being Head Shopper and Errand Boy!

My Mum who is 92 but has embraced Face Time!

Nice meals with fresh produce from our allotment

Opportunities to meet new people from MDS community

Power walks for my 20 for 20 project

Questions Questions Questions. (Aren’t scientists amazing?!)

Re-assessing priorities in life

Surprised by support and kindness of neighbours and friends in my fundraising efforts

Twenty for Twenty and meeting such a great group of people in the fundraising group

Unbelievable ignorance from a politician from across the pond and elsewhere with hoax stories and fake news

Vaccines, vials, validation, value - remains to be verified in long -term trials

Wintrich -Sophie - holding it all together, making massive changes to how MDS patients are supported

X -Xmas -not what we were promised but now safer for all

Year 2021 -hopefully an improvement for us all

Zoom -what else?! The great enabler of 2020! It helped us keep in touch, attend NHS,MHRA,EMA meetings, meet people with MDS from around the UK. My choir met every week so we got to sing some wonderful choruses - all muted!

Take care all

Have a safe, enjoyable Christmas and a wonderful New Year

Chris Dugmore Xx

I’d like to personally thank all of you for your collaboration, presence, engagement, support, feedback, generosity and willingness to share your experiences and emotions.

Your input is unique and irreplaceable.

Many of you have been a tremendous inspiration to newly diagnosed families, helping them through the first few difficult months after diagnosis, or during some tough treatment times.

Or, sadly after the loss of some of our members.

Thanking our great local group coordinators, who make everyone feel welcome and engaged in these new zoom meetings. An essential group of people, without whom the charity could not function.

Thanking our entire Committee for their volunteer work throughout the year. A hard working bunch, without whom this charity would not exist.

And our staff, especially the newcomers, Chaudian and Jan, who joined just as Covid started!

A challenging beginning for them.

And thanking our website editor Manuela for her brilliant work and advice.

This MDS community is stronger, louder, able to contribute to research and raise awareness of this rarer blood cancer.

A few practical details now:

Our office will be closed from:

Thursday 24th December at 6pm

to Monday 4th January 2021 at 9.30am

Hope to see you all for a return to work, bit refreshed, hopefully virus free.

If you do require medical advice or assistance, as ever, please call your nurse specialist at your hospital.

From all of us at MDS UK, staff, committee members and volunteers, we wish you a healthy, safe Christmas, and a much improved 2021.

Stay well, stay safe and hope to connect again in January 2021.

Sophie Wintrich, CEO MDS UK

Tel – 02077337558

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