Stem Cell Transplantation: A recorded Zoom session with MDS UK patients and specialists from King’s College Hospital.

On August 25th 2022, Dr Victoria Potter, Consultant Haematologist &  Michelle Kenyon, Clinical Nurse Specialist, from King’s College Hospital, led a session on stem cell transplantation to a large group of MDS UK patients.

Below is a recording of this fantastically valuable session chaired by Chris Dugmore, Essex Group Coordinator,  Volunteer & Volunteer Coordinator with MDS UK. 

The session starts with an overview of the issues involved in stem cell transplantation followed by a Q&A between specialists and patients. The recording is approximately 1hr 50m and has invaluable information and support for those considering a transplant.

Dr Victoria Potter is the Consultant Haematologist and Transplant Programme Director at King’s College Hospital. She has been at King’s College Hospital since 2010 and estimates she has over-seen over 1000 stem cell transplants in that time. King’s is one of the 3 largest transplant centres in the UK.  

Michelle Kenyon has been a Clinical Nurse Specialist at King's College Hospital for almost 25 years.  She also runs a 'Long Term Effects' clinic for people who’ve had a stem cell transplant.  Michelle is the co-author of two books on stem cell transplants. 

If you are listed as a vulnerable or disabled person, due to MDS or any other condition, and your local water authority has imposed a hosepipe ban, please contact their customer service department and ask to be added to their priority service register.  

Certain exceptions apply to the hosepipe ban in the case of older/vulnerable persons, for example, you may still be permitted to use a hosepipe to water plants if you would have difficulty managing a watering can.  One of our supporters registered yesterday, with South East Water, and received a supply of bottled water today too!

The Birmingham Football Association has just announced their collaboration with our amazing ambassador Simon Wilkes and charity partner Anthony Nolan. Simon will be working with the FA to increase the number of people registered as a Stem Cell donor across the West Midlands and Warwickshire using Grassroots Football as a stimulus for individual recruitment. This is fantastic news for the Wilkes family.

'Words can't explain what all this means to me, I never thought in a million years I would get the story this far...so excited to get this off the ground and potentially save lives' - Simon Wilkes.

 

Simon is an MDS patient himself and he and his wife Lynn and son Ben have supported MDS UK for many years.  Read more about Simon's own patient experience here:  https://mdspatientsupport.org.uk/mds-stories/simon-wilkes-hopefully-so-many-lives-will-be-saved/

Simon and his family are also fervent supporters of Anthony Nolan, organising stem cell donor recruitment drives in their local area, using his network as a football coach.

The Anthony Nolan Charity aims to increase the number of people signed up to the Stem Cell Donor Register. across the UK. There are currently 880,000 individuals nationwide that are signed up.

The Wilkes family had been involved in Grassroots Football for 22 years, before tragedy struck in 2017 when their son Olly passed away. Their last day together as a family was at a charity event, 11 days prior to Olly's passing and they were raising funds for two chosen charities, MDS UK and Anthony Nolan. Since Olly’s passing, many of his friends and family have signed up to the Stem Cell Donor Register.

The Wilkes family made a decision to organise memorial events as a legacy to 'Our Olly' in heaven. The first Olly Wilkes Memorial Football Tournament was organised for 19 May 2018 with the Anthony Nolan recruitment team attending. This resulted in a further 52 people signing up to the stem cell register.

Driven by the need to raise awareness of MDS, and stem cell donations, Simon, along with family and friends & their beloved "Withymoor Colts Family" continue to organise events like these.

Due to COVID, the event was postponed several times – but The Olly Wilkes Football Tournament will finally go ahead on 25^th June 2022. This event is very special and a further legacy to their son Olly. Funds raised for the tournament will be divided between MDS UK, the Lily Mae Foundation and Withymoor Colts RE-UNION.

Simon and the committee organising this special event are looking for anyone able to support it with gifts for the Grand Raffle, Memorabilia Auction, tombola or any other ways to assist. Any enquiries - please contact Simon via Ashleigh Venables at fundraising@mdspatientsupport.org.uk, or direct to simonwilkes27@blueyonder.co.uk

The Wilkes family thank Ikuto Group Ltd for their sponsor!

For more on the Birmingham FA collaboration see birminghamfa.com 

CEV - (Clinically Extremely Vulnerable)

Technically speaking, no MDS or CMML patients should have issues accessing vaccines or anti-COVID19 medication.

If however, you encounter problems, do point any GPs to the document below, which is a new list identifying exactly and precisely who the highest at risk patients are, in terms of COVID-19 infection. MDS, CMML and transplant patients are all listed.

This is the work of a new UK advisory group, supported by the NHS England RAPID-C19 team.

'The recommendations are to support the deployment of approved medications for treatment or prophylaxis, potentially across a range of scenarios.'

Access to Evushield should therefore be made available, according to the recommendations. Click below to read the report.

(Please note this CEV report is a UK only initiative.)

Defining the highest-risk clinical subgroups upon community infection with SARS-CoV-2 when considering the use of neutralising monoclonal antibodies (nMABs) and antiviral drugs: independent advisory group report - GOV.UK (www.gov.uk)

COVID-19 is not yet over for blood cancer, as you all know. Access to medication and services has been difficult, in the UK, and other countries.

The International COVID-19 Blood Cancer Coalition (ICBCC) has updated their website in May - with further supporters for the cause, and a call for action.

We urge you to read the Patient Impact Statement, and consider forwarding the letter to your MP, asking them to raise the topic in parliament. You could ask;

• What are the plans to increase research to better understand the vulnerability of blood cancer patients to COVID-19?
• Why are not all anti-Covid medications available in the UK yet?
• When can we expect more psychological services for blood cancer patients forced to isolate?
• Write to your MP, with a short summary of how you are remaining in isolation, what it means to you and your family, your employer.

Click here to read the ICBCC Patient Impact Statement 

The sun was shining for our trio riding for MDS on Sunday 29 May - Tim Woolley, Adrian Skardhamer and Alexander Myers - all cycled 100 miles in the RideLondon-Essex 100 challenge in support of our charity! Our brilliant riders arrived within an hour of each other.  

Alex was the first to arrive after 6h 32min followed by Tim at 7h 40min and Adrian 7h 47m. A huge CONGRATULATIONS!! and thanks to all of them!!

  Alex and Tim spotted each other and managed to get a selfie mid the race and Adrian completed the race using a mountain bike which added an extra challenge as it was heavier than the other road bikes competing. 

We had a great spot next to Tower Bridge to welcome our riders. Sophie met one of our youngest supporters Rajika who spotted our logo and remembered it from when her school fundraised last year for MDS  The family are now in contact about another potential fundraiser. 

Once in central London, they completed their ride to rapturous applause at Tower Bridge – a stunning Finish Line for the 100-mile challenge!! 

Please help by donating via their Just Giving pages.

Tim Woolley says on his JustGiving page 

I will be doing this to raise money for MDS which is a charity that is very close to my family. My uncle John was diagnosed with MDS a number of years ago and unfortunately for everyone who knew him, he eventually passed away from it. 

Adrian Skardhamer's JustGiving page says 

While, I'm a keen-ish off-road cyclist and normally ride a couple of times a month (if it's not raining, or windy, I'm not hungover, and there's a pub at the end), this ride is still going to be an absolute nightmare for me. I will be doing this to raise money for MDS as my uncle John passed away from it. Please help me out, not least cos if I don't make the target I'll have to pay the balance as well as ride the stupid race. Cheers Ade 

Alexander Myers JustGiving 

I am aiming to complete RideLondon-Essex 100 2022 to raise funds for the charity, having previously done so in 2018. 

 

Alex's father-in-law is our wonderful treasurer Don Barrett who has been doing an amazing job for so many years. We met Don from our previous Chair, Prof Rodney Taylor – who did such a huge amount for our charity - and passed away from MDS  - after serving as Chair for almost 7 years. Rodney's wife has also always been hugely supportive of MDS UK. 

A HUGE THANK YOU to Tim, Adrian, Alex and all their friends and sponsors for their support! 

Their efforts raise public awareness of MDS and our small charity MDS UK. We need as much help as possible in order to carry on our work of supporting patients and campaigning with them! 

The Route 

They set off from Victoria Embankment in central London and head into Essex via the historic Epping Forest. Once in Essex, they cycled past some of the county’s most picturesque towns and villages, including Ongar, Fyfield, the Rodings and Great Dunmow, before joining a section of the 2014 Stage Three Tour de France route. 

They went through Felsted and around the county town of Chelmsford before heading through Writtle and back towards Ongar and central London. 

If you've been inspired by this story, why not join us next year for RideLondon 2023. You can take part in a 30, 60 or 100 mile race to support MDS.  If you're interested email Ashleigh Venables - Fundraising Officer MDS UK at fundraising@mdspatientsupport.org.uk