CureDM Connect: November 2025

Hello and welcome to CureDM Connect

Hello and welcome back to CureDM Connect monthly blog for November. This Blog is going to be busy one, so settle down with a brew and let’s get into it. November has been a super busy month for CureDM, within this blog I’ll be talking about the news from the AGM annual Trustee conference, lots of fundraising updates from our community, work going on in the background with regards to new publications and not to forget CureDM turning 5 years old!

Happy Birthday!

Firstly, a big happy birthday to CureDM, which has just turned 5 years old! Emma-Jayne and Pete have been working tirelessly with their campaigning since their son was diagnosed in 2015, opening their (now closed) Charity shop and creating CureDM CIC, then joining with Founding Trustee Stephen to officially start Cure Myotonic Dystrophy UK Charity in 2020. As someone that has been part of the community for the past 2 years, I know and appreciate the support CureDM and their community provide. It brings light in the dark and our family, alongside countless other families, are super grateful for their continued efforts for support, awareness and research within the DM community.

Here is what our founding trustee Stephen had to say about why they started CureDM, and a reflection on the past 5 amazing years!

“In 2008 when Paula and Matthew were diagnosed with Myotonic Dystrophy (DM) we had no idea what it was. All we were given was a scrappy photocopied piece of paper with a contact number on it, and the Internet to explore and scare ourselves witless. I was determined that no other family faced with a Myotonic Dystrophy diagnosis should face the fear, panic, or isolation we did in those early years.

In founding CureDM with Emma-Jayne and Pete our main aim was to create a Myotonic Dystrophy Charity that first and foremost provided support to all Individuals and their families affected by DM. We were passionate that at all opportunities available we could raise awareness of this disease and hoped that over time we could provide support and funding to increase research and hopefully contribute to finding a cure for Myotonic Dystrophy.

In the last 5 years we have seen our “little” Charity go from strength to strength, watched our DM community grow beyond expectation, and feel a huge sense of pride in seeing all those attending our events chatting, making friends and arranging to meet up. With research and trials into drugs for DM treatments higher than ever before, we are all a long way a way from our dark first diagnosis days. We hope CureDM will continue to grow and always be there for those with DM that need us.”

And to celebrate this truly amazing milestone we wanted to share with you that since founding the charity in 2015, you have helped raise an incredible…

£272,000

Fundraising

CureDM wouldn’t be able to do a lot of their work within the community and within their campaigning for research and awareness without the kind donations and fundraising efforts from supporters of the charity. This includes individual fundraising and also kind contributions from other organisations in the wider community of the charity. The money raised so far has allowed CureDM to do so much for families living with DM all across the UK. Make sure to check out last months blog post that had lots of information about how CureDM can best support you and your family HERE! X

CureDM loves to celebrate their community and are so grateful for individuals, their families and wider organisations that choose to support the charity through fundraising. We wanted to give a special shoutout this month to Declan and Lorraine, who have completed the stunning Cuilcagh Boardwalk Trail, to raise awareness and funds for Myotonic Dystrophy. Supporting 3 Charities (CureDM, MDSG and MDUK) they have raised an outstanding

£7096 (plus Gift Aid)

Thank you from all at CureDM and why not check out their fundraising page HERE X

Another hugely successful fundraising recent event that saw 24 individuals (12 from Team Toby running for Together for Toby) ran the Great North Run 2025 in Newcastle for CureDM. Together they raised an amazing

£12,747.60 (including Gift Aid)

making it the best year yet for attendance and fundraising! Well done to all those that took part, you did a fantastic job! If you are interested in being part of the 2026 team for the GNR then you can register your interest HERE !. Let’s make 2026 bigger and better!

There are lots of ways to help fundraise and raise awareness of Myotonic Dystrophy within CureDM. A brand new and exciting opportunity that the charity launched in April this year was their ‘CureDM Together Campaign’.

People like to raise funds for charities close to their hearts, and the push for this is often due to personal experiences – this is certainly how CureDM began. The ‘Together’ Campaigns’ are a way for families or groups to raise funds in their own way, sharing their own journey, whilst benefiting from support from Cure Myotonic Dystrophy UK Charity. Check out the Together Campaigns HERE and why not check out the first ever family to join – ‘Together for Toby‘. They have been fundraising since September 2024 and in just over a year have raised an incredible amount over £14,000 through a range of events that their family, friends and wider community helped to support.

November review

November has been a busy month for CureDM and their has been lots going on behind the scenes and within the local community.

CureDM and their trustees met this month for their annual AGM meeting. This is a 2 day event in which the Trustees (you can find them HERE) meet to discuss important matters regarding the Charity, making decisions around funding and discussing up and coming events. It is also a chance to come up with new and exciting plans for the upcoming year.

“Last year I attended our AGM from my hospital bed, so this was the first time we had all had a proper chance to sit down together for 2 years – it was a LONG meeting, but we all left feeling so excited for the year (s) ahead. This AGM gives the Trustees an opportunity to see how the Charity has been running over the last year, to discuss any pressing matters, plan for conference attendances, and think about the upcoming events we might like to put on for the community. This year we spent 2 full days in the meeting, and could easily have spent 2 more – it is SO EXCITING to see how we are growing and actually making a noticeable difference to the DM community, in the UK and around the world. We can’t wait to share future plans, and send our HUGE THANKS to everyone who supports us, because we simply wouldn’t be doing any of this without you!

Major Thanks to Emily, who came along to help look after little STAR. We wouldn’t have had such a productive meeting without this extra help – and Star really enjoyed their time together! YOU ARE WONDERFUL!“ (by Emma-Jayne)

Earlier this year, 166 individuals from the CureDM community came along to the CureDM Chester Zoo Family Fun Weekend in July 2025. You can watch a short charity made video about the event here.

This was CureDM’s biggest event to date and meant so much to a lot of people within the community.

Looking forward to Christmas of 2025, and the next event the charity has planned is a wonderful and magical visit to Longleat Safari Festival of Lights in December 2025. Raising awareness of DM and fundraising for CureDM enables the charity to provide family support in the form of peer-support events like this. This event will include access to the park and additional Winter Safari for families followed by a CureDM meetup and walk round the FESTIVAL OF LIGHTS! We can’t wait to see photo’s!

Thank you!

Thank you so much for taking the time to read my November blog and I hope you found it useful and informative about what the charity is getting up to and all the exciting plans. December will be a festive round up of our CureDM Christmas event and if you would like me to discuss anything else as on the blog then please do let me know and reach out to CureDM. Looking forward to the new year we will be looking at proactive steps you can take to best support yourself or your loved ones living with DM and also lots more exciting updates.

Becky x