May 2026 – IDMC 15, CureDM Family Day 2026 and launching our new fortnightly MAKATON group!
Written by Becky Cartwright
Hello and welcome to CureDM Connect
Hello and welcome back to CureDM Connect monthly blog for May 2026. I can’t quite believe how quickly time is going and we are already nearly half way through the year. CureDM have had a fantastic start to the year with the first ever London Marathon team and representation at lots of important conferences for the DM community. In this months blog we are going to be rounding up what weve bene up to recently, and take a look forward to upcoming events. Thank you so much for joining me once again and I hope you enjoy having a read of what happened in May with CureDM.
Looking ahead to the rest of the year, we have the CureDM Family Day in July, and another amazing team of people representing the charity at the Great North Run in September. CureDM is growing year on year and it is a privilege to be a part of it.
IDMC 15
At the end of May, CureDM Pete and Dr Nikoletta Nikolenko flew the flag for CureDM at the IDMC in Canada. The International Myotonic Dystrophy Consortium Meeting is an amazing event which offers an incredible opportunity to learn about recent advancements, exchange ideas, and build connections among all those involved in the field of myotonic dystrophy: researchers, clinicians, patients, patients partners and associations, and representatives from the pharmaceutical industry.
Thanks to generous donations from families, CureDM were able to sponsor 2 prizes for posters on Congenital Myotonic Dystrophy. CDM has always been a big focus for the charity and an area that needs a lot more funding and research. Thank you very much for the kind donations that made this happen, it really did make a difference to the event.
Dr Nikolenko also presented our own UK poster at the conference, this was an amazing way to show the prevelance and needs of the UK community, to spread awareness, and help facilitate research and patient care. We are very proud to be able to advocate in this way. You can view the poster if you follow the link HERE. A big thank you to everyone that recently took part in the CureDM questionnaire which allowed us to pull together lots of really important information and data about patient experience with DM.
The poster was titled: Patient-Reported Experiences and Preferences Regarding Palliative and End-of-Life Care in Myotonic Dystrophy: A UK Community Survey. This area of care is seen to be lacking for the DM community and CureDM hope these survey findings will be used to facilitate improved patient experiences within healthcare and break down the stigma around PEOLC. CureDM are always here for you at whatever stage of the journey you are on. Please do reach out if you need any support or advice regarding day to day care and support, palliative care or anything else. We are always here for our community, living it alongside you.
Over 400 people joined together in Canada and worked tirelessly for the DM community. I for one am so grateful that we can represent the DM community at such huge events like this, taking the opportunity to truly show what we really need, to share the voice of those who are living with this condition. It is amazing to see just how many scientists, researchers and individuals from across the world join together at this event, sharing a real passion for DM and improving the lives of those living with it everyday. CureDM’s main focus has always been support, research and awareness and events like these are a true representation of that in practice. The future for the DM community is brighter thanks to events like this taking place. Thank you very much Pete and Nikoletta for representing CureDM and the wider DM community at the IDMC – read more about our attendance HERE!
Drayton Manor Family Day 2026
Mobing on to this years CureDM Family Day, we are off to Drayton Manor: home of Thomas Land, Drayton Manor Zoo and lots of rides and exciting attractions for the whole family. Did you know – the CureDM Family Day first started as a few families that joined together for a picnic in a park, and has grown and grown to this year where we are expecting over 180 individuals to join us, the biggest event to date!
There are so many exciting things happening over the course of the weekend, and if you are lucky enough to be joining us, a full breakdown and itinerary will be sent to you very soon. Don’t forget to check the Facebook group that will have all the relevant information posted closer to the time. You can find the Facebook group HERE
There will be talks by members of CureDM throughout the weekend, a chance to catch-up with other families and individuals from the community, and also opportunity talk to us about any support or questions you might have. Don’t worry if rides aren’t your thing – there is a lovely Zoo on site which can be reached by a walk or a ride on Thomas, Percy or Rosie – part of the parks very own train that takes your from Thomas Land over to the Zoo area.
There are plenty of spots to grab some food and drinks, shops and more. We had a lovely explore of the whole theme park when we visited recently- there is so much more to do than just rides!
If you are joining with little ones they will love Thomas Land! There are lots of rides in this area for little ones and parents can join them too. From aeroplanes, to helicopters, cars to submarines – children of all ages will love it here! We joined CureDM Trustees at Drayton Manor a few weeks ago for a site visit, and Toby absolutely loved Thomas Land (as did we). We are super excited to be going back very soon with the CureDM Family.
Launching our new MAKATON group!
We are so excited to be preparing for our new fortnightly MAKATON group – please follow this link to read more and sign up! This group is free for our community, and open to all – we can’t wait to see you on the calls and to learn some new skills!
Thank you
Thank you so much for checking out the CureDM Connect monthly blog for May. I have really enjoyed writing this months and I look forward to sharing all the news in June when we will have lots more exciting updates. If you would like to catch up on any blogs you might have missed please follow the link HERE.
Becky – CureDM Social Content and Engagement Lead