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In memory of Bev Nye

We are very saddened to hear about the passing of our dear member Bev Nye.

Bev and his wife Janet were active volunteers and contributed enormously to the wellbeing of other MDS patients by starting the Derbyshire Local MDS Group. We will miss him badly.

Bev and Janet shared their story with us for our Newsletter back in 2015. You can read their story here

Their daughter Rosemary has set up a Memorial fund to remember and honour him.

Here are her moving words:

Dad had MDS, a rare blood cancer which transformed to acute myeloid leukaemia this january and sadly passed away on the 14th of June 2019.

MDS UK was a great help and comfort to Dad and Mum as he battled this condition over the last number of years. He was always full of fun and positivity and fought so hard to beat the cancer, he will be sorely missed by everyone.

He wanted to support the charity as much as he could so asked that people donate to MDS UK instead of sending flowers for the funeral so we have set up this page to that end. Please help support the charity which gave him so much support.

Love you always Dad you are our hero who could fix almost everything, you will always be our sunshine, our hairy gorilla, bouncy tigger and yellow banana shark, your trusty assistant / youngest daughter.

Our deepest condolences to Bev's family and friends. We are immensely grateful to them for choosing MDS UK as recipient of donations in his memory.

All donations will go to ensure that MDS patients and families receive the attention and information we can provide to help them deal with the condition.


Anglia MDS Support Group

Thank you so much to the members of the Anglia MDS UK Local Support Group, and to their outgoing coordinator John Heywood and their treasurer Michael Turner.

The group raised money for MDS UK by handing around their collection tin at meetings, and we are very appreciative of the organisation that went into this, and the generosity of all the donors.

Anglia's Patient Support Group

Donations such as these are vital for our ongoing service to patients in the UK which includes:

  • information and general support
  • organizing patient forum events across the UK
  • helping us continue with projects such as our current national survey to assess the unmet needs of patients and families in terms of MDS information, support, and speed of diagnosis
Anglia Group Donation Poster

In memory of Brian Hallisey

MDS UK Patient Support Group has received a Memorial Donation for £365, in memory of Brian Hallisey.

Brian passed away on Friday 1st of March 2019, aged 75, surrounded by family, after a short illness.

A beloved husband to Norma for 52 years, a devoted father to Amy Laura, her husband Ben, and an adoring Bampa to Gryff and Nancy. Gone too soon and desperately missed.

Thanks to all donors who contributed to his memorial fund set up by Norma.

We offer our deepest condolences to Norma, her family and all their friends.

In memory of Brain Hallisey

Visit our Donations Gallery


In memory of Christopher James West

MDS UK received Memorial Donation for £535, in memory of Christopher James West, from Pontypool, who passed away in January 2019 from MDS. We are very grateful to his wife, Mrs Christina West, who chose MDS UK to receive these donations.

Christina also sent in a lovely photo of her husband, with a few words about him:

This photo, taken some years ago, at the coast, is illustrating his life-long love of the sea. Christopher was in the merchant navy and loved ships and nautical themes.

He was very much loved by everyone who miss him dreadfully. We realize his suffering is passed and he is now at peace

We offer our deepest condolences to Christina, her family and all of their friends.

Christopher James West
Christopher James West

Visit our Donations Gallery


Fiona Pirilla had a Dry January raising funds for MDS UK!

Fiona's amazing MDS story

"Most of you know I have had MDS since 1999 and I'm thankful for the drug treatments that keep me relatively fit and healthy.

Myelodysplatic Syndrome is a very rare group of blood cancers and if it wasn't for drug treatments I would be on continuous blood transfusions. At some point in the future I may require a bone marrow transplant but I try not to think about that too much and hope for continuous advancements in drug treatments.

I've decided to go sober for January and donate any money raised to the MDS Patient Support Group which is a fabulous charity helping people through their journey with this bone marrow/blood cancer.

I'm amazed at the amount of donations I've had. £705.09 is so far the total and more than £800 with Gift Aid. I didn't take a photo of me with a n8n alcoholic drink but I have attached a photo of tonight - my first alcoholic drink!!"

You can still donate on Fiona's Virgin Money Giving Page donations will be very gratefully received!!

Fiona is one of our MDS UK Patient Support Group Trustees and Directors since 2009 and one of the original founding members of the MDS group that started in 2008. We are proud to have Fiona as one of our dear Committee Members

Fiona was diagnosed in her early 30’s with a type of MDS called del(5q). She had only just begun blood transfusions when she was offered the opportunity to participate in a Lenalidomide drug trial between 2006-2007. Her blood counts and quality of life vastly improved. Once the trial had finished unfortunately she was denied the drug for a period of time because of the fact that it was not licensed and funded. Her story was used in the NICE appraisal for lenalidomide, which Fiona took part in, to demonstrate to the committee what crucial difference the drug made to her quality of life.

The drug Lenalidomide is now used routinely for isolated del(5q) patients.


Rowland Phillips Watercolours

Rowland Phillips is an architect of 35 years and for the past 22 years has designed healthcare buildings, specialising in Clinical Planning. He is also a talented artist, although he considers his art only a hobby. His works can be seen on his website rowlart.tumblr.com.

Recently, through his friendship with our patron Caitlin Limmer, Rowland has generously given two of his paintings and asked the money to be donated to MDS.

We received two donations from Andrew Ryan and Faisal Islam who bought Rowland’s artwork.

For us, as a small charity, it is a dream to get fundraisers with such a generous heart. Rowland not only raised money, but made people aware of MDS. This is particularly important for rare conditions which are totally unknown amongst the general population.

We are immensely grateful to Rowland, Andrew and Faisal for their support.

All the money raised will go to ensure that MDS patients and families receive the attention and information they need during those particularly difficult times – straight after diagnosis, at treatment changes, time of transplant or progression of the condition

Rowland with Caitlin holding one of his amazing watercolours

Rowland with Caitlin

Rowland in his studio


In Memory of Mr Anthony Woodburn (Tony)

We are deeply sorry to share the news of the death a lovely and long-standing MDS UK member: Mr Anthony Woodburn (Tony), who had joined the MDS UK community in June 2013.

Anthony passed away at home on the 10th September 2018.

Tony had been a staunch supporter of our work, attending many group meetings, helping us to campaign, regularly checking on the progress of our little charity, providing advice, offering support – and being an extremely generous donor as well.

He was diagnosed aged 65, in 2008, with the low-risk MDS del 5q. Sadly, after about 5 years, in 2013, his haemoglobin started to drop and he embarked on a trial for a drug that was not yet available on the NHS.

Happily, he responded very well to the drug – and his contribution did not stop here.

Post-trial, the drug went through the NICE process and was initially rejected, which prompted MDS UK to renew efforts to campaign for its recommendation on the NHS.

Tony helped us, by writing about his experience, strengthening our submission and request to NICE to review their decision.

Fortunately, this work paid off, and the drug is now fully available in the UK.

The help that Tony provided is far reaching – from agreeing to take part in a trial, understanding what kind of work was required, sharing his experience, spreading awareness of the condition, following news of NHS and Department of Health activities, to supporting us financially when he could. Over the years, he donated an amazingly generous £12,000 towards our work.

Tony had a unique way of donating funds to us. As an antique dealer specialising in rare and precious clocks, he used to send us a very generous donation of £1000 each time he sold a particularly rare clock.

Strangely enough, the passion for horology was shared by our chairman, Ted Peel, as well as our scientific advisor Dr Dominic Culligan – who discovered their shared interests at one of our MDS patient meetings – and were delighted to discuss watches and clocks together. Personally, I will miss the conversations we had at King’s College Hospital, the ongoing research in MDS, the necessary advocacy work, his genuine care and concern about the work we are able to do for patients, the future and well-being of the organisation.

As a growing organisation, we were actually thinking of inviting Anthony to join our committee – so I am also sorry to miss out on the benefit of his wisdom and kind support.

He was a lovely, caring, quiet man, and left a huge impression on people he met.

The King’s College Hospital Haematology team, as well as his local haematology team in Brighton all expressed their deep sadness, and send their sincere condolences to the family.

Our thoughts are with Sonja, his wife, his children Jessica and Tim and grand-children Honor, Lila, Thea, Amelie and Maggie.

Sophie, CEO, MDS UK

Mr Anthony Woodburn (Tony)

I was so sad to hear of the death of Anthony, particularly since I had just drafted a letter to him thanking him for his tremendous support for MDS UK over a prolonged period and asking him if he would consider becoming a Trustee or Patron of the Charity. Without the generosity of Anthony and other benefactors like him, none of our work would be possible.

Ted, Chairman, MDS UK

According to Tony’s wishes, the family has asked for donations to MDS UK or Bloodwise, instead of flowers – and set up page for tributes, donations and messages :
https://www.memorygiving.com/anthonywoodburntony1

Please visit a previous entry on our website about Tony, dating from 2016 – with a link to his website and beautifully restored antique clocks and barometers.

https://mdspatientsupport.org.uk/donations/anthony-woodburn-donations-jan-2016

Visit our Donations Gallery


The Bearcat Running Club

The Bearcat Running Club is organised and run by our amazing patron Caitlin Limmer, with the support of a large crew of UKA qualified and insured leaders.

Their run routes vary each week and include Marble Hill / East Twickenham Towpath, Richmond Park, Kew Towpath, Teddington Lock and Crane Park. Sometimes with a few hills and intervals for good measure!

This year some members of The Bearcat Running Club will take part in part in various marathons, half marathons and running challenges, raising awareness and also much needed funds for MDS UK Patient Support Group.

Steve Wimbledon will run the Brighton Marathon on Sunday, 15 April. You can sponsor him through his Virgin Money Giving Page.

On the 22nd of February Jess, Bridget and Moni run the Thorpe Park Half Marathon, loud and proud, and kindly wearing MDS Patient Support Group tops to raise awareness.

Their unstoppable work didn't stop there! On the 22nd of March, to the sell out of Turks Head 10k, a charitable donation of £2347.82 has just been paid to MDS Patient Support Group.

We have the last 20 golden ticket places for Turks, that can make another £1,000. Get in touch if you'd like to contribute.

Thank you for your INCREDIBLE CONTINUED SUPPORT BEARCATS AND FRIENDS!

All the money raised will go to ensure that MDS patients and families receive the attention and information they need during those particularly difficult times – straight after diagnosis, at treatment changes, time of transplant or progression of the condition.

The Bearcat Running Club at Thorpe Park Half Marathon

Anita Jamieson & Rachel Parrish-Crighton Table Top Sale raises funds for MDS UK

Anita Jamieson and Rachel Parrish-Crighton held an incredibly successful table top sale on 17th February in Marston Village Hall selling donated items to raise funds for MDS UK Patient Support Group & Bloodwise. During the event they also run a raffle, a tombola, a cake stall and charged a small entry fee.

Through all these activities they managed to raise an amazing £3,000, which was split equally between MDS UK Patient Support Group & Bloodwise.

In addition, Rachel brought in cake for donations, raising an extra £100 for MDS UK Patient Support Group, at a dress-down day at her workplace: Frontier Agriculture.

They told us in an email:

Our Dad was diagnosed with MDS at the age 68 and is currently having intensive chemotherapy in Addenbrookes Hospital, where he has to stay in for the next four weeks. This is all in preparation for a bone marrow transplant.

Top Table Sale

It is truly humbling meeting people like Anita and Rachel. They are going through tough times, and yet, they find the energy and the drive to organise a fundraising event which will make a real difference to all MDS patients and their love ones.

They not only raised money, but made more people aware of this rare blood cancer. This is particularly important for rare conditions which are totally unknown amongst the general population.

We are immensely grateful to Anita, Rachel, and all their friends and donors.

All the money raised will go to ensure that MDS patients and families receive the attention and information they need during those particularly difficult times – straight after diagnosis, at treatment changes, time of transplant or progression of the condition.


Mind Over Massage

Mind Over Massage is a Mobile and clinic based massage clinic run by therapist Bernie Howley. Bernie has qualified at St Mary's University Twickenham in ITEC, Level 3 Body Massage and Level 4 Sports Massage.
For the second year in a row, Bernie fundraised for MDS UK Patient Support Group at Hampton Court Half Marathon!

For us, as a small charity, it is a dream to get fundraisers with such a generous heart. Bernie not only raised money, but made people aware of MDS. This is particularly important for rare conditions which are totally unknown amongst the general population.

Donations are still coming in as Bernie's collection will take place all year long!

We are immensely grateful to Bernie, and all his friends and sponsors.

All the money raised will go to ensure that MDS patients and families receive the attention and information they need during those particularly difficult times – straight after diagnosis, at treatment changes, time of transplant or progression of the condition.

Bernie delivering his donation last year

Bernie at work at the marathon this year


Free donations by shopping