October 2025 – What is CureDM and how we can support YOU!
Written by Becky Cartwright
Hello and welcome to CureDM Connect
Hello! My name is Becky Cartwright and I am the writer of the CureDM Connect monthly blog. I am 29, live in Wigan (England), and both myself and my son, Toby, have Myotonic Dystrophy Type 1. CureDM have supported me and my family since my son was around 3 months old. This is when we received the diagnosis that Toby was born with Congenital Myotonic Dystrophy Type 1, and my own diagnosis followed a few months later. I am in no doubt when I say we simply would not be in the position we are today without them, and we owe a lot to the Trustees and other wonderful individuals and families involved in the Charity.
I will be writing a monthly blogs for CureDM to keep you current on exciting things happening within the Charity. I will talk about updates regarding trials or new advances in science that are helping us to better understand and treat Myotonic Dystrophy, about the key aims of the Charity, including support, awareness, and how we to best support individuals and families that reach out. CureDM has a varied and extensive breadth of knowledge surrounding Myotonic Dystrophy and the Charity strongly believes in these three aims being the pillars and the ethos surrounding all they do within their community.
What is CureDM?
If you have found yourself reading this blog, it is likely you have some (or a lot, or maybe none at all) understanding surrounding Myotonic Dystrophy and the Charity CureDM. Cure Myotonic Dystrophy UK Charity was born in 2020 by Founding Trustees Emma-Jayne, Pete, Stephen, Karl and Alison. Alison and Karl have moved on from the Charity, and the current Trustee board now includes Tamsyn, Liam and Wendy. The charity has grown from strength to strength with its passion and determination to provide help and support to those living with DM, their families and caregivers. Emma-Jayne and Pete have been raising vital funds for Myotonic Dystrophy since 2015, and have kept that momentum going for over 10 years!
CureDM supports a wonderful community of individuals and families living all around the UK with DM, who come together regularly at CureDM’s AMAZING family fun days. They are available to offer support and guidance right from the very start of just diagnosed, through schooling, EHCP procedures, ensuring you are receiving the right level of care, and more personal advice and support if and when necessary. Doing all of this wouldn’t be possible without donations, fundraising, and individuals like you who fundraise for them.
How can we support YOU!
- Private families Facebook Group
- Peer Support
- Family Fun Days
- Opportunities to join in with fundraising
- Personalised and individual private support
- A caring supportive community
- And much more!
CureDM offers a wide range of support so please do reach out and get in touch, to discuss your needs and how best to support you. A great source of support which CureDM offers is a private peer support group on Facebook. This was actually the way I first reached out to the charity after being passed on their details from a peer supporter at another charity. Everyone in this group has either been in your shoes, or knows someone that has. It is a kind and supportive environment that offers positive and real stories and advice from individuals that really ‘get it’.
CureDM also facilitate Family Fun Days up to twice a year, which are hosted all around the UK. The most recent events have been a family fun weekend at Chester Zoo in July 2025, and a magical ride on The Polar Express in December 2024. These events are truly magical and are all about making core and lifelong memories with family and friends in a safe and friendly environment. Events are fully funded by the Charity, and they can offer support with accommodation where necessary and when funding is available.
Meeting other families and individuals you might have connected with online, experiencing things you might not have thought possible, and being able to chat and connect with others is so important. Meeting others that have been where I am now has always been a sense of comfort to me and my family. They truly understand and can also offer words of wisdom. Sometimes, just to hear ‘I completely understand’ is all you really need.
Year on year, CureDM raise thousands of pounds to help support families and their loved ones. Not only through events, but also by supporting medical professionals and researchers in their drive for treatments (and a cure). Being able to support research and clinical trials is fundamental to improving quality of life and assisting in the fight for a cure.
If you are interested in fundraising for CureDM there are lots of ways to do so. It is always important you find something that makes you happy or maybe something you have always wanted to do. Brad (my husband) joined CureDM up in Newcastle as part of their team for the Great North Run. We have also had family members fundraise for us from doing fun runs to half marathons, and even a skydive as part of our Together Campaign ‘Together for Toby’. I know lots more families across the community have fundraised in lots of different ways too! CureDM are always there to message or offer support if ever you want to donate or fundraise, and it is a great way to raise awareness within your local community too.
CureDM offer guidance and support when it comes to looking after your health and wellbeing, and can signpost you to care recommendations, health care plans, specific guidelines and much more. This can also include things such as alert cards and making you aware of the kinds of tests and medical support available, alongside lots of other helpful resources.
If you or someone you know has been affected by Myotonic Dystrophy, you can reach out for support, guidance, information or maybe just to see what or who is out there for the future. We understand that not every avenue of support will work for every person or every family, and we understand it can take time to process new diagnoses, so won’t overwhelm you with information. We also know, for some families, knowledge is power and they simply want to know it all, and want all the information at their finger tips…. that is okay too! We don’t ever want people to feel alone, and I hope that this post has given you a little bit more of an insight into who we are how we can support you.
Thank you!
Thank you so much for taking the time to read my first ever blog post as part of CureDM Connect, and I hope you will be back soon to check out the next ones! If you have a burning topic you want me to cover, reach out and I’ll do my best!
Becky x
Becky and Son Toby