Hello and welcome to CureDM Connect

Hello and welcome back to CureDM Connect monthly blog for March. Spring is finally here and it is always so lovely how a little bit of sunshine lifts your spirits. I hope you are all well and are looking forward to catching up with what has been happening in March for CureDM. Every month is super busy at CureDM and this month is no exception. We will be sharing what our Trustee Emma-Jayne has been working really hard on for the last few months and why we need your help. I will also be sharing my personal experiences on how CureDM has supported me in applying for grants from other organisations, and the positive impact that has had on our family. CureDM doesn’t offer funding grants for individual equipment, however, they were a fantastic support network for our family during the application and I will go into more of that a little later in the blog. So grab a brew and join me while we find out what has been happening this month at CureDM.

We need your help!

We need your help DM community! CureDM Trustee and co-founder Emma-Jayne has been working tirelessly over the last few years, with a heavier focus during 2026, on a project she feels very passionately about to further help and support the DM community.

“Within the Charity we regularly receive requests for support during emergency and medical situations, and we try to always be on hand to help in any way we can. Over time it has become more apparent that we were seeing a real trend and can almost predict how the situation will progress. This led me to the realisation that those we rely on for help are really lacking the DM specific insight into what causes our community to go into hospital, what happens once they are there, and more importantly, how we can recognise the pattern before it leads to emergency, and sometimes fatal, outcomes.

This questionnaire is aimed at patients and caregivers (and can be completed for loved ones who have passed away also), and results will be shared at upcoming medical and scientific conferences. There is currently no real-world evidence to support our experiences (particularly for children) and this is the first step to changing the narrative, and getting the help for our loved ones to keep them out of hospital – please do complete it, the more results we have the better.

Palliative care in DM is NOT only end of life (although it is important to consider Advance Care Planning as part of PC) – it is keeping ourselves as healthy as possible once disease progression leads to needing more input, with the correct support and treatments, and the right people behind us. When the time comes and we start looking at end of life, things will have been discussed and be in place when we are not dealing with emrgencies, and our loved ones preferences are adhered to. It is not an easy discussion, but it is an important one, and I think we should all have our wishes documented, whether we live with DM or not”

Emma-Jayne recently co-presented a webinar – “Palliative Care and DM: Living Well at Every Stage” with the MDF in USA (click link to view recording). It was a really informative and interesting seminar. Lots of the information discussed and presented was new information to me or something I hadn’t given much thought to, but I absolutely will be doing from now on. Below is what she had to say after presenting on the seminar:

“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“

CureDM work tirelessly to broach these difficult subjects, and to gather important information and data from individuals and loved ones within the community with DM1 and DM2. This helps us to accurately represent and advocate for the community. By presenting posters at worldwide conferences, this information can help to guide and support key publications and guidelines, and will also help to represent the community for future research and therapies – if we can show where we need support, we can show if a treatment is working. Successfully raising awareness and most importantly the lived experience of the UK community, whilst providing support to clinicians and researchers that work alongside the charity, is all possible because of the wonderful community surrounding CureDM and everyone that has contributed to this and previous surveys.

By sharing personal experiences with CureDM, you are actively helping to support and shape the future of research priorities, improve clinical guidelines and ensure the voices of those affected by Myotonic Dystrophy are heard worldwide. The questionnaire that we are asking you to complete currently will be used to support posters for upcoming international conferences and meetings and to most importantly help us to understand and share experiences of specific topics such as illnesses, hospitalisations and experience with Palliative and End of Life Care.

2026 Community questionnaire

Access the Questionnaire HERE

The survey will take approximately 15 minutes to complete and below is some brief information about what to expect. If you have any questions about taking part then please do reach out.

CureDM is committed to supporting everyone affected by Myotonic Dystrophy, no matter where they are on their journey. The survey aims to gather information about risks related to illness and hospitalisations, as well as your experiences with palliative and end of life care. Even if you haven’t had any interactions with these services, your input is valuable so please answer as much as you are comfortable with. You can complete the survey for each family member including children and share it with others who might be able to help. The more responses, the more positive the changes will be. We understand that it is a very complex and difficult subject and any experiences you wish to share will help us to improve the care for future generations and we truly appreciate all contributions. THANK YOU!

Supporting the community to access grants.

My little boy Toby is 30 months old and we have been working very closely with his physio team since he was around 6 weeks old. We have such a positive and happy relationship with them and this means we have been able to trial lots of new equipment. I won’t pretend that having medical equipment in your home and around your baby or small child is easy, it can be quite the opposite. I have always had a ping of sadness, fear, apprehension and lots of other emotions when equipment has been discussed or delivered to us. However, it is all about perspective for us and especially as parents or caregivers it is our job to make these pieces of equipment as fun, interesting and less scary as possible. Children feed of our emotions and actions and they are a lot more receptive and see and hear a lot more than we sometimes realise.

Children with Congenital Myotonic Dystrophy face many challenges, and they can benefit from specialised seating, play mats, highchairs, standing/walking frames and much more. CureDM Trustee Liam says this about his sons experience of using a specialist walking frame:

“Louie’s walker has completely transformed his independence. It has allowed him to access different areas of the house and he’s also had one at his nursery, and now school. The walker has enabled him to take part in activities with his peers that he would otherwise not have been able to participate in, and it’s improved his strength and mobility to such an extent that he now rarely uses it and has learned to walk independently.”

In December 2025 Toby’s physiotherapist loaned us a Firefly Scoot. I will pop a few pictures and a video below of our ‘Scooty’ as we call it. We have always named all of our Toby’s equipment, we find it makes it less scary and also lightens it for us as parents too. We have had Standy Andy, Rocking Rosie, Booties (Ponsetti boots and bar) and many more. The link to find out more about the Scoot from the Leckey website can be found HERE.

The Firefly Scoot is like a little baby wheelchair that allows Toby to self propel when both indoors and outdoors. The Scoot was on loan to us for 8 weeks and it was also a good trial to see if Toby would be able to use a child’s wheelchair, which it was very soon deemed he would. Toby is unable to walk or weightbear currently, and to help with his independence the Scoot has been amazing for us as a family. Unfortunately, Scooty is not available on the NHS although the physio’s will ‘recommend’ it, it is not funded. After speaking to Emma-Jayne at CureDM she was able to advise about other charities and organisations that could help with grant applications for equipment like Scooty.

CureDM supported us through the entire process from sending over information on different organisation which provide grants, helping to find the right one for us, support with the application process and even wrote a personalised supporting letter for us to attach to the application outlining why this piece of equipment would be good for Toby from a DM specific outlook. Within a few weeks we received a letter that we had been successful with our application and we were able to purchase our own Scoot. An important thing to note however is that we had to self-fund a small part for the equipment as the grant did not cover the entirety of the price. So, please do be aware of this when applying for grants and do look at specific costings of equipment before applying for the grant. There is usually specific information you will need to send off including medical reports, invoices and supporting evidence and not all grants will be accepted.

It was an amazing feeling to be able to receive the grant and purchase Toby his very own Scoot and we know he is going to get so much independence and fun from it. Scooty has already joined us on lots of fun days out and also goes to nursery with Toby to enjoy being outside with his friends.

If you are looking at equipment grants and would like some advice or a personalised supporting letter from CureDM then please do email us at curedm@outlook.com. You can also find a list of charities and organisations that do provide funding grants on the WELLCHILD website HERE

Upcoming CureDM events:

London Marathon 2026 April: CureDM’s FIRST ever Team at this epic event. Tune in next month to read all about it!

CureDM Families Day July: Click HERE to register to attend and learn more about it. (Do not leave it too late, deadline is looming!)

Great North Run September: We still have a small number of spaces available for this epic half marathon – click HERE to sign up and join Team CureDM!

International Myotonic Dystrophy Awareness Day September 15th: Please do reach out with your ideas and suggestions on how you can help us to raise awareness on this important day.

Thank you!

What a busy month March has been! It has been a pleasure to recap all the wonderful events and updates we have to share and thank you so much for taking the time to read all about it. We are hoping you are enjoying the CureDM Connect monthly blogs. I have been doing them now for 6 months and you can recap with any you might of missed HERE. Once again, if you would like anything covering in a blog or have any ideas of useful information you would like sharing then please do reach out. Looking ahead to April we will be celebrating our London Marathon runners, finalising the plans for our July Families Weekend at Drayton Manor and also sharing all the events and updates from April. I look forward to catching up with you all soon and once again, thank you so much!

Becky x