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A fantastic day at RideLondon 2022

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Logo - RideLondon-Essex challenge 2022

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 Myers

Image of Alex Myers after cycling 100 miles for MDS UK

 

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!!

Tim Woolley

Image of Tim Woolley after cycling 100 miles for MDS UK

Adrian Skardhamer

Image of Adrian Skardhamer cycling 100 miles for MDS UK

  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. 

Image of Tim Woolley and Alex Myers cycling 100 miles on RideLondon-Essex 100 challenge

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. 

Image of Tim Woolley, Adrian Skardhamer and their second cousin Chris Charlwood from MDS UK
MDS Patient Support

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

They have raised nearly £3,000 so far for MDS! 

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. 

MDS Patient Support

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

REPAIR-MDS : Repurposed Drugs to Improve Haematological Responses in Myelodysplastic Syndromes

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MDS Patient Support

Research FOR Patients
-For an informed and empowered opinion-

All the trials listed on our site have been properly vetted for scientific accuracy. Many thanks to Dr Simone Green – Hull and East Yorkshire Hospitals NHS Trust - for the continuous work in updating the listing.

REPAIR-MDS Repurposed Drugs to Improve Haematological Responses in Myelodysplastic Syndromes

  1. SUB-TYPE OF MDS: All subtypes of MDS
  2. SEVERITY OF MDS:  Lower-risk MDS
  3. NAME OF DRUG: 
  4. Aims and benefits: REPAIR-MDS seeks to repurpose existing drugs in order to dramatically improve the outlook, health and quality of life of people with MDS. The trial treatments aim to improve the production of healthy functioning blood and immune cells that will fight against infections and boost the immune system's action against the MDS clone.
    REPAIR-MDS design is a is a multicentre open label phase 2 randomised controlled trial which will compare VBaP (sodium valproate, bezafibrate, medroxyprogesterone) with danazol in patients who have received either Erythropoiesis Stimulating Agents (ESAs) and lost response, not responded to ESAs or are deemed unlikely to respond to ESAs.
  5. Primary outcome: Haematological improvement (HI) in each arm and in the trial overall, with 25% or more of the participants having HI in each arm and overall. [ Time Frame: 12 months ]
  6. Secondary outcome:  Reduced burden of red cell and/or platelet transfusion in each arm and in the trial overall, as per the IWG 2018 response criteria. [ Time Frame: 12 months ] Changes in transfusion requirements will be assessed in each participant by comparison with their individual 16-week lead-in baseline as determined by the IWG 2018 haematology response criteria in patients with MDS.
    • Duration of haematological response [ Time Frame: 12 months ]
    • Clinically meaningful haematological responses that persist for 16 weeks or longer.
    • Reported improved Health Related Quality of Life scores in each arm and in the trial overall. [ Time Frame: 12 months ]
    • The four Health Related Quality of Life questions measure
      1. 1 - self-perceived health (excellent, very good, good, fair, or poor)
      2. 2 - number of days out of the past 30 that physical health was not good
      3. 3 - number of days out of the past 30 that mental health was not good,
      4. 4 - number of days out of the past 30 that usual activities were limited by poor physical or mental health of life scores will be evaluated using established protocols.
    • Overall survival

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MDS UK opening times over the Christmas period

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Come to our Christmas Zoom cafe!

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Just a little reminder for you to let your hair down and come along to the Christmas Zoom café social today! (December 13th: 1.30 pm - 3.00 pm)

When: Tuesday 13th December
Time: 1.30pm-3pm
Where: Online via Zoom

 

Please register as soon as you can so we can plan the activities but, in advance, here are some handy hints for attending:

  • Please wear a Christmassy / winter jumper / dress / shirt and/or Christmassy hat
  • Have a pen and paper handy for a short fun quiz
  • Think about introducing yourself with a short, little-known,  fact about yourself!
  • Bring an actual Christmas cracker along for a Christmas cracker screenshot and also share a few Christmas Cracker jokes - the cornier the merrier!
  • Have you got an amusing Christmas story to tell - disasters or triumphs?
  • There will be some singing but all fully-muted - so NOBODY will hear you!

To register just click the red button below and complete the registration page.  (After registering, you'll receive a confirmation email with information about how to join the meeting).

MDS UK Christmas Tree 2022

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Free donations by shopping