MDS UK Patient Support Group

18/08/2026

🏃‍♀️ 𝗟𝗲𝘀𝘀 𝘁𝗵𝗮𝗻 𝗮 𝗺𝗼𝗻𝘁𝗵 𝘁𝗼 𝗴𝗼 𝘂𝗻𝘁𝗶𝗹 𝘁𝗵𝗲 𝗚𝗿𝗲𝗮𝘁 𝗡𝗼𝗿𝘁𝗵 𝗥𝘂𝗻! 🏃‍♂️
On Sunday 13th September, our incredible #𝗧𝗲𝗮𝗺𝗠𝗗𝗦𝗨𝗞 runners will be taking on the world's biggest half marathon in support of our MDS community.

While race day is fast approaching, we'd like to take a moment to recognise everything that's happened behind the scenes.

Taking on a challenge like this requires months of training and dedication and our runners have been putting in the miles whilst fundraising for MDS UK.

We are incredibly grateful for their support and all they are doing to raise vital funds and awareness for the charity.

𝗧𝗵𝗮𝗻𝗸 𝘆𝗼𝘂, #𝗧𝗲𝗮𝗺𝗠𝗗𝗦𝗨𝗞.❤️

We can't wait to be there on race day, cheering our runners on every mile of the way to the finish line.👏

11/08/2026

Joe's channel swim for MDS.

After over two years of training, at the start of which he had to learn to swim front crawl, Joe Thomas, whose dad Pete has MDS, finally entered the sea at Dover at 3 am last Friday, 7th August. After more than 12 hours in the water, Joe's English Channel challenge was brought to an end when his pilot made the decision to stop the crossing, because worsening weather and sea conditions made it unsafe to continue.

Although Joe didn't reach France, his achievement was nothing short of extraordinary. For more than 12 hours he swam through cold water, powerful tides and relentlessly changing conditions in one of the world's most demanding endurance challenges. His attempt ended only when his experienced pilot judged that the conditions had become unsafe to carry on.

From learning front crawl just two and a half years ago to taking on the English Channel, Joe has achieved something remarkable. His challenge has inspired everyone at MDS UK, raised vital awareness of MDS, and demonstrated the determination, resilience and generosity that have driven every mile of his fundraising journey.

Thanks to Joe and the incredible generosity of his supporters, over £19,000 has been raised for MDS UK. Every donation will help us continue providing trusted information, specialist support and advocacy for people affected by MDS and their families across the UK.

In a heartfelt tribute to Joe's incredible feat on our behalf, Dr Blossom Bell, CEO of MDS UK, said:

"Joe, what you've achieved is nothing short of extraordinary. While the weather prevented the Channel crossing from being completed, nobody can doubt the scale of your achievement or the commitment you've shown over the past two and a half years.
On behalf of everyone at MDS UK, thank you for choosing to support our community. The more than £19,000 raised will make a real difference to people living with MDS and their families across the UK.

I'd also like to thank Pete, Rose, Milla and everyone who supported Joe throughout this remarkable journey. Achievements like this are never accomplished alone, and we're incredibly grateful to all of you. Joe, you may not have reached France, but you have inspired a great many people along the way, and you should be enormously proud of what you've accomplished."

For the full story and photos of Joe's channel swim attempt visit the dedicated page on our website here

Joe Thomas' English Channel Challenge For MDS UK. Inspired by his dad Pete's MDS diagnosis, Joe is swimming the Channel for MDS UK. Please donate.

11/08/2026

We have fantastic facilities and incredible minds in the UK scientific community, but we can't - and shouldn't - rely on industry partners and drug companies to fund research into new treatments and therapies. So all power to CRUK and this campaign! ♥

At our bi-annual Parliament Day event, almost 100 of our Volunteer ...

07/08/2026

🌊 𝗝𝗼𝗲 𝗧𝗵𝗼𝗺𝗮𝘀'𝘀 𝗘𝗻𝗴𝗹𝗶𝘀𝗵 𝗖𝗵𝗮𝗻𝗻𝗲𝗹 𝘀𝘄𝗶𝗺 𝗶𝘀 𝘂𝗻𝗱𝗲𝗿𝘄𝗮𝘆!
At dawn this morning, Joe entered the water at Dover and began his incredible English Channel crossing in support of MDS UK.

Supported by the pilot and crew aboard 𝘔𝘢𝘴𝘵𝘦𝘳𝘱𝘪𝘦𝘤𝘦, Joe is now taking on one of the world's toughest endurance challenges.

Joining him every stroke of the way are his mum and dad aboard the support boat, managing his feeding plan, monitoring his progress, and helping him through the physical and mental challenges that lie ahead.

As Joe battles cold water, strong tides and hours of relentless swimming, please join us in cheering him on every step of this incredible journey. 🏊‍♂️🏊‍♂️

We're all behind you, Joe. Wishing you every success. ❤️

🔗 Read Joe's full story: https://mdspatientsupport.org.uk/joe-thomas-is-swimming-the-english-channel-for-mds-uk/

📍 Track Joe's crossing live and follow his progress in real time: https://www.channelswimmingassociation.com/tracking MASTERPIECE Pilot Boat.

31/07/2026

The NHS has issued a plea for regular donors to 'give before you go', as blood stocks run dangerously low due to the holiday season.

An urgent appeal has been issued to blood and platelet donors across England to help fill over 60,000 appointments available across the country as the NHS faces a significant shortfall in blood stocks.

31/07/2026

✨𝗔𝗻 𝗜𝗻𝘀𝗽𝗶𝗿𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗙𝘂𝗻𝗱𝗿𝗮𝗶𝘀𝗶𝗻𝗴 𝗖𝗵𝗮𝗹𝗹𝗲𝗻𝗴𝗲

Last July, Clint was diagnosed with MDS.

This Sunday, Clint and one of his best mates, Roxy, will take on a charity head shave together, surrounded by his daughter Jodie, family, and friends, as he prepares for the next stage of his MDS journey. Having successfully completed the intensive chemotherapy phase, he is now preparing for a stem cell transplant in the coming weeks.

As part of the preparation, and despite being rather attached to his gorgeous locks, Clint has made the decision to shave his head on his own terms, rather than waiting for hair loss as a result of treatment.

Joining him every step of the way, Roxy is helping to raise vital funds and awareness for MDS UK, supporting people affected by MDS and their families.💞

Thank you, Clint, for allowing us to share your story and help raise awareness of MDS.

Our MDS community is supporting you as you take on this inspirational fundraising challenge❤️

30/07/2026

Sunflowers are everywhere at the moment 🌻🌻🌻 ... did you know we have a virtual sunflower garden where you can 'plant' a flower in honour or memory of a loved one? You can post a photo and message, send a link to friends and family, and visit as often as you like! Donations - though always welcome - are optional.

Plant a virtual sunflower to thank someone or honour a loved one. Support those with MDS & CMML—every donation brings hope and funds vital support.

28/07/2026

Great news for those living in the West Midlands, as Maggie's Centres announced for Coventry and Birmingham ♥
For more info https://bit.ly/4yKEZho

22/07/2026

🌟 Could You Be Our Next Fundraiser? 🌟

Over the past couple of months, our incredible fundraisers have gone above and beyond – taking on challenges, hosting events, and bringing people together to make a lasting impact.

From a 100-mile bike ride and a 150-mile June walking challenge, to taking on the London Marathon, the Turks Head Run, and a Walk of Life, every fundraiser has helped us raise vital funds and awareness for our MDS Community.

A huge thank you to everyone who has supported, taken on a challenge, organised an event, donated, or cheered our fundraisers on. We couldn't do it without you.♥

Now we're looking for more amazing people to join them!
✅ Fundraise your way
✅ Get friends, family, or colleagues involved
✅ Make a lasting impact

Whether you have a fundraising idea ready to go or simply want to find out more, we'd love to hear from you.

📩 Get in touch today and let's make a difference together.💞
[email protected]

17/07/2026

At the moment, around 20% of our community members are caregivers and family members supporting someone with MDS. Although we know they do this willingly, many are at the same time juggling families, households and job. Any initiative which aims to recognise, appreciate and provide support for caregivers has to be a positive thing, so we welcome the announcement made this week by the DHSC.

First ever cross-government action plan to support unpaid carers published.