December 2025 – Festival of Light, DM Animation and more!
Written by Becky Cartwright
Hello and welcome to CureDM Connect
Hello and welcome back to CureDM Connect monthly blog for December. This blog will be my third one so far and if you haven’t read October or November’s yet then click HERE to check them out. We are approaching the end of 2025 and CureDM have yet again had a wonderful and very busy year! The last event of 2025 was the Christmas event at Longleat Safari park, visiting their amazing Festival of Light and it most certainly got everyone in the festive spirit. Everyone within the Charity is really looking forward to all the exciting plans for 2026 and we hope you will join us and keep up to date with our regular updates.
Merry Christmas!
A big MERRY CHRISTMAS to all that celebrate from CureDM and we hope you all have (or had, depending on when you read this) a wonderful Christmas with your family and friends. We wish you all a happy and healthy 2026!
Festival of Light
It was great to welcome 15 families to our Christmas event at Longleat Safari – Festival of light. These events are a great way to meet others that are living with DM and share experiences up and down the country. The events are always super popular and year on year we are welcoming new people and connecting individuals from all over the UK. The events are getting bigger every year.
Our big summer event of 2026 will be a weekend at Drayton Manor……home of the famous Thomas Land which I know my little one Toby is going to love! We are all super excited about and the planning and preparation is very much under way. But, going back to this year at Longleat Festival of Light, we have received lots of positive feedback from our families and it was another super and very popular event.
“Thank you so much for our trip to Longleat last weekend… the kids found it magical. We appreciate everything you & the charity do for us throughout the year, it means more than we can ever express fully in words.”
I have put together a short video montage of all of the fantastic photos shared by our families which you can watch below. Our CureDM YouTube is also a fantastic place to check out lots of family event videos of past years and is another way you can keep in touch with updates from us so make sure you head over and check it out.
Myotonic Dystrophy NHS Animation
Over the last year or so, CureDM have been advising and supporting the production of a DM1 animation – to be used to help describe Myotonic Dystrophy in an easy to understand way. It is voiced by real patients living with Myotonic Dystrophy, thank you to those in the community who were involved. We think it is important that when something is made FOR a community, it has the input OF the community.
The animation is presented by Dr Chris Turner and Dr Nikoletta Nikolenko and CureDM were a big part of contributing to the content and development. The video was recently shown on an MDUK webinar and we as a charity have shared it far and wide on our social media. It has received some very positive feedback and we are delighted that it can be used to make a positive impact. CureDM are committed to supporting families living with Myotonic Dystrophy, raising awareness and facilitating research, this is just one of the things we achieved in 2025 to help reach those aims and support the families and individuals in our community. You can view and share the animation from our YouTube page.
The animation is a great introduction to DM and explains the different ages of onset for DM1, and different symptoms which may be experienced at each stage. It also explains some symptoms which you might see within individuals with the condition that you maybe wouldnt have linked with the condition, and when or how they might present. We hope you will check it out and share it among your family, friends and wider clinican groups.
Palliative and End of Life Care Webinar
On December 12th, Emma-Jayne co-presented a webinar with the Myotonic Dystrophy Foundation in USA. The webinar was a special Ask the Expert session on “Palliative Care and DM: Living Well at Every Stage,” an important and often under represented discussion point for our community.
Here is what Emma had to say after taking part in the webinar:
“Palliative and End of Life Care, especially for people living with DM, is a subject I am very passionate about. In the Charity we regularly support people at the point of emergency, or when it is becoming too late to implement key services which could have a positive effect on the individual. We are very keen to raise the profile of PEOLC, and to remove the stigma associated with these difficult discussions. Access to palliative care, and support in writing Advance Care Plans, can have a huge positive impact. Access to services which help keep you out of hospital extends lives, and access to hospice support, for children and adult, is vital for supporting individuals and families. 2026 will see more work being put into this difficult, but very important, subject”
The webinar explored how palliative care can enhance quality of life for people living with DM and their loved ones by focusing on physical comfort, emotional support, and practical guidance at every stage of the journey. If you missed it the seminar was recorded and you can watch the recording HERE. You can discover how palliative care approaches can help you or your loved one live more fully with dignity and compassion while managing the challenges of DM. Palliative care can be a difficult subject to breach with family and friends and it sometimes can be hard to know where to start. It can also feel like a subject that you might not feel you even need to think about right now, but the seminar was really informative, considerate and caring in its approach when discussing sensitive matters while making the subject less taboo to speak about. It gives you helpful and advice and guidance on understanding what palliative care can look like and the important of having those open and honest conversations sooner rather than later. It is important that your family and friends are aware of not only your wishes but things that are and aren’t important to you and when it comes to care, what you might want and not want to happen. I know this is something that I hadn’t given a lot of thought to but it is definitely something I have thought about more since the seminar, and is something I feel more confident to speak about now with family and friends.
As part of the seminar we heard from Dr. Cynthia DeSoi, a hospice and palliative care physician inspired by her own family’s experience with DM, and Emma-Jayne, the Trustee of Cure DM and a passionate advocate for improving care and support for families living with CDM. The MDF have several “Ask-the-Expert” webinar series featuring DM clinicians with diverse specialties. After the success of the Stump-the-Doctor session at the 2020 Virtual MDF Conference, MDF created a series using the same format to connect families and DM experts. You can check out their website here for future seminars.
Thank you
A shorter blog from me this month but I hope you have enjoyed reading and keeping in touch. CureDM and it’s many supporters and volunteers are always very busy with all things DM and working hard behind the scenes to support its community. From everyone at CureDM we hope you have had a nice relaxing time over the festive period and spent quality time with family and friends. We look forward to sharing lots more news over the next few months in the blog and once again, if you would like to see something in the blog we have not yet covered do get in touch.
Becky x