Hello and welcome back to CureDM Connect monthly blog for February. I hope you have all had a wonderful start to the new year. February has been a very busy month for CureDM and this blog is coming to you slightly later than usual but I hope it is worth the wait! Reflecting back on February there has been lots of exciting news, changes and events, so I really hope you will enjoy reading all about it.

Volunteering with CureDM

We are really excited to share that over the next few months there will be opportunities arising within CureDM for the roles of Official Volunteers. This is something the charity are really looking forward to showcasing, highlighting the importance of giving individuals within the community a voice and a role within the charity.

This will be something you can apply to be a part of and focus on supporting the charity in a range of different roles that suit you and your interests and skills. We can talk through what it is you are wanting to support the charity with, any key skills or interests you might have and what the role would look like for you. CureDM is growing year and year, and with a small board of trustees that work tirelessly, we are really looking forward to having passionate individuals with lived experience of having DM (or caring for someone that does) to join our team.

The first opportunity is The CureDM Focus Group – follow this link to learn more. There is a form at the end if you would like to register an interest. And of course, if you would like to discuss it further, please email us on Curedm@outlook.com

This seems like a good time to share that I am super excited to announce that I have recently joined the CureDM as the Social Content and Engagement Lead, and am looking forward to getting more involved in the Charity’s exciting upcoming plans, including supporting with the annual Awareness Day Campaigns on September 15th. This was our first fundraiser for Team Toby back in 2024!

Follow the link HERE to refresh yourself with the CureDM team.

TREAT-NMD Conference 2026

At the start of February, CureDM Trustee Dr Wendy Greenwood flew out to Lisbon to join the annual Treat-NMD Conference. Wendy was at the conference proudly presenting our CureDM charity poster. Thank you to everyone in the community who shared their experience and enabled us to advocate for you. This was a great opportunity to have a voice at a conference like this that was able to represent our community and also listen to valuable information about the progressing treatment for other neuromuscular conditions.

Treat-NMD are internationally recognised for their key role in successfully addressing some of the major issues that face therapeutic development in neuromuscular diseases. The conferences are great events that bring together the neuromuscular community, inform stakeholders with essential knowledge and resources, and advance the development of innovative treatments for neuromuscular conditions. 2026 was the 8th international conference and the 3rd time we have attended and presented a poster. Patients, clinicians, researchers, industry and regulators come together to tackle the biggest challenges in the diagnosis, treatment, and care for those living with DM and other conditions.

Care guides for the DM Community

A main focus for CureDM is having information on hand for individuals and caregivers when they need it most, especially during those initial few months after diagnosis. Knowledge is power when it comes for preparing for the unexpected and with a variable and progressive condition like Myotonic Dystrophy, being prepared is not only important but can also be vital for receiving the best care.

We understand that information regarding the symptoms, progression, treatments, and care needed can be overwhelming. Individuals and their families might not want all the information at once and that is okay. CureDM are on hand whenever you need them with help and support regarding care guidelines, advice and support, and sign posting to relevant information. For me personally, I am very much a knowledge is power type of person and I find ‘comfort’ in having all the relevant information at my finger tips, giving me time to process it and put into action whenever I need to. But, I do understand that does not work for everyone.

You can follow the link HERE which will take you to the care guidelines available from CureDM. These are publications that CureDM have worked on to help support and publish, or from other charities/associations supporting individuals with neuromuscular conditions – specifically Myotonic Dystrophy.

We are currently working on developing a DM Support Plan page to highlight the importance for planning and having relevant information and paperwork. This will be available to download from the website, and personalise for your specific needs. The purpose of this is to have a DM Support Plan Folder you can take with you to annual reviews, new appointments, GP visits or emergency A&E admissions. It will outline key information about Myotonic Dystrophy, general effects and also specific individual symptoms, pointing healthcare professionals to more information, and to your own team.

This has never been more important or valuable to me than most recently when Toby spent 6 days in hospital. Initially for a viral infection which quickly turned into a bacterial infection, IV antibiotics, fevers, rashes, chest x-rays, countless blood tests, a chest infection and four days on oxygen. Toby’s DM Support Plan alongside the care guidelines I could access through CureDM were priceless. Not only for us during a very stressful situation but countless nurses commented that the information we were able to provide, whether it be Toby specific or general DM information, was really valuable to improving Toby’s care. Keep an eye on the blog over the next few months when we are hoping to get this finalised and launched to the DM Community.

Rare Disease Day 2026

Rare Disease Day is a globally coordinated movement, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease. The day is observed on 28th February (or 29th during a leap year) and serves as a powerful focal point for driving advocacy and efforts locally and internationally.

CureDM are proud of the work they do within the Global Alliance for Myotonic Dystrophy Awareness. It is coming up to 6 years since they co-founded the alliance alongside the Myotonic Dystrophy Foundation. CureDM continue to work hard on the steering committee, Awareness Day alliance meetings, and day to day within our own Charity. We are seeing the Alliance building momentum and reaching far and wide – with over 60 International organisations now registered.

International Myotonic Dystrophy Awareness Day – A global alliance of over 60 myotonic dystrophy-focused organisations have, once again, united to celebrate International Myotonic Dystrophy Awareness Day on September 15th. This is critical to raising awareness of DM to help improve the quality of life for people living with the condition. DM is a rare and multi-system affecting condition. It is progressive and genetic and is often mis-diagnosed or diagnosed late and despite learning more about it everyday it is still rare and unheard of to most. DM is also considered to be one of the most complex and variable condition yet the only treatment is symptom management and there is currently no cure.

Every day is rare disease day when you live with DM in your family – but for those not as familiar with the road we travel – Rare Disease Day is a good excuse to help spread awareness of Myotonic Dystrophy and the community surrounding it.

Final countdown!

As of 1 March 2026 there is exactly 8 weeks until the London Marathon 2026! We know lots of our runners have been out training and some taking on 10k’s and even half-marathons as part of their training routines! We want to wish them all lots of luck and positivity during their last few weeks of training and we can’t wait to see you all there. This will be the first team of runners CureDM have ever had at the London Marathon and if you would like to be a part of the team for 2027 then please do let us know.

Click the link HERE to be taken to CureDM Enthuse page where you can check out the 13 runners taking part and their fundraising pages.

Thank you!

Once again, I would like to say a massive thank you for reading this months blog. I look forward to catching up with everyone in March when we will be sharing lots more exciting news from the charity. If you have any questions or would like a particular topic covered then do let me know. Thank you all for your continued support.

Becky – CureDM Social Content and Engagement Lead