Hello and welcome to CureDM Connect

Hello and welcome back to CureDM Connect monthly blog for January, and the first blog of 2026! Happy New Year to all the CureDM community. We hope the start of this year has been kind to you and your loved ones.

New year, same me!

January is always one of those funny months, some people are making lots of new years resolutions and starting a fresh. Others, might not want to change anything and are happy to just be welcoming another year. We are very much the second, and haven’t set any resolutions this year. I think when you or those around you have DM, it can be hard, between managing appointments, caring responsibilities, or juggling work and other family commitments, it can feel very busy and sometimes overwhelming.

We try very hard to make light in even the darkest of times and we want to spend lots of meaningful family time together this year and enjoy as many happy moments as we can. Toby is fast approaching two and a half and we can’t believe just how quickly time is going and his little cheeky personality is shining through brighter everyday. Please do let us know what plans you have for 2026, we would love to hear all about it. If you would like anything particular covered over the next few months in the CureDM Connect Blog, then do get in touch!

Memorial Collections for CureDM

Over the last few months here at CureDM, we have been very touched and moved by the donations that have been made in loving memory of individuals within the DM community, and their wider families. It always saddens us to hear of people passing away from DM. There is no escaping the fact that Myotonic Dystrophy is a life-threatening condition, and in our time supporting the community we have lost many people who started of as strangers, but ended up as friends and family. We are devastated every time we hear of someone passing away form DM, and are always honoured to be recognised as a Charity to receive in memory tributes.

This was something my family did when we lost my beloved Nan in January 2025. We were unaware whether she in fact had DM, but as we know, many ‘early generations’ often don’t show symptoms. She lived to an incredible 94 years old and had such a wonderful life filled with so much love, laughter and adventure. After Toby and my own diagnosis, CureDM became a charity that was at the heart of our entire family, and our wider family and friends wanted to donate and support the charity that had very quickly became so important to us. Our whole family had felt and seen the support we have received and what the charity stands for and their passion and determination for the DM community.

We know how devastating it is when you lose someone dear, and at CureDM, this understanding is very close to our hearts. As a rare disease charity, every trustee of CureDM has experienced the challenges of Myotonic Dystrophy firsthand within their own families. There are lots of different ways in which you can gift to CureDM in memory and these can be found on our donations in memory page, which you can visit HERE.

Run for CureDM

TCS London Marathon 2026

CureDM help organise lots of fundraising events throughout the year, the two big ones this year are the TCS London Marathon 2026 on April 26th and the Great North Run 2026 on September 13th! Toby’s Daddy, Brad, was very fortunate to receive a place this year running for CureDM as part of Team Toby along with two others. There is also another 10 joining them running as part of Team CureDM. Brad is super excited to be part of the first group of runners running for CureDM in the London Marathon as it has always been a bucket list dream of his. CureDM are very fortunate to have received charity places for the next few years and I know the waiting list for the next couple of years is filling up already – so do reach out if you are interested!

We are heading to London with some family members this year to make sure CureDM have a big team cheering them on as they all take part in this once in a life time occasion, running one of the biggest marathons in the world!

Despite all the 2026 places being taken you can still register your interest for 2027 and the following years by completing the form you can find HERE. It would be an amazing achievement to represent not only a very worthy charity but be part of the history of running the London Marathon. It is said that less than 1% of the population globally complete a marathon in their lifetime. It would be a VERY cool achievement and not just that, you are helping to support the families and the charity that works so hard for the DM community they have built. As a small Charity, we only receive 12 spaces per year, so we really do hope to make the most out of it!

AJ Bell Great North Run 2026

Another big fundraising event in the CureDM calendar is the Great North Run up in Newcastle. CureDM have had a team as part of the GNR for a number of years. They had their best year to date with 23 runners taking part in 2025 with 12 runners for Team Toby and another 11 for CureDM raising an incredible £12,747.60. This was the first big event for Team Toby too and was a lot of their first times running a half-marathon. I know at the time I don’t think many would have said they enjoyed it (some did) but I know they all had a really great time and they did it all with a smile on their face for a charity that is so close to our family.

If you are interested in taking part in the GNR for 2026 you can still register your interest HERE. The places for 2026 haven’t yet been announced so if you like to join Team CureDM for the GNR we would love to have you! Remmeber – you can still join the team and run for us if you have a ballot place!

Fundraise your way!

If running isn’t your cup of tea, don’t worry, there is still lots of other ways you can not only fundraise but raise the profile and awareness of CureDM and Myotonic Dystrophy. During our fundraising challenges, we have found that raising awareness of CureDM and Myotonic Dystrophy to be equally as important. It still amazes us how many health care professionals have never heard of Myotonic Dystrophy, and it is always one of my aims when I go somewhere new to explain a little bit about it. We meet lots of new people within our community and we are keen to raise awareness with them too. We have been fortunate enough to be in our local newspaper after hosting several fundraising events. Here are some fundraising ideas you can use in your local community. Do get in touch if you are thinking of doing some fundraising, we are always happy to support with ideas, leaflets, merchandise, donation sites and much more.

• Charity bake sales in schools or offices
• Local running events (run funs, colour runs, obstacle courses)
• Sponsored swim, walk, jog or dance!
• Quiz, bingo or comedy nights with family and friends
• Raffle or auction items such as sports memorabilia or lucky tombola
• Themed parties – costume parties or fancy dress
• Blind cards, guess the teddy’s name or guessing jars
• Myotonic Dystrophy Awareness day activities – GO GREEN!
• Ask local businesses for support or raffle items
• Bucket collecting at local supermarkets or sports games
• Ask local organisations to make CureDM their charity of the year
• Check out local events in your area you can take part in
• Charity football/sports match
• If you are looking for something BIG – Sky Dive
• If you have any other ideas do let us know

Together Campaigns

If you are wanting to take fundraising to the next level, why not join the CureDM Together Campaigns. Click HERE to find out all about the Together Campaigns and what you can do to raise awareness and fundraise and make it extra special and personal to you and your family. If you would like to have a peek at a live Together Campaign – Together for Toby then click HERE to check out our Facebook group. We absolutely LOVE being part of the this campaign and if you would like any advice or to talk to a family that are very much at the start of their journey then please do reach out.

Meet the Trustees

Here at CureDM we have an amazing team of Trustees that work super hard behind the scenes year round for CureDM and the families they support. Each of them with the their own unique experience of Myotonic Dystrophy within their families whether that be personally, their children or their wider family members. Each one with a story to tell about how Myotonic Dystrophy has touched them and their family.

Since the charity was founded in 2020 the founding trustees, Emma, Pete and Stephen, have worked tirelessly in their campaign for support, research and awareness for the DM community, with the newer trustees joining them along the way to offer their lived experiences, passion and determination to change the outcomes for DM families. If you would like to learn more about our trustees and their experiences click HERE.

Each new Trustee role is held for 3 year periods. It is with a lot of sadness that we are having to say goodbye to Tamsyn who is leaving the official role at the end of January to focus on family commitments. Tamsyn has been a fantastic addition to the CureDM team when she joined back in 2022. We are not really saying goodbye though, as an active member of the CureDM community, Tamsyn will still be part of the family, attending events and continuing to raise awareness. Here is what Tamsyn had to say at the beginning of her Trustee journey.

“I am really excited to be part of the CureDM team. My daughter’s diagnosis of CDM1 and my own subsequent diagnosis of DM1 means I can relate to those who have the condition whilst caring for a child with the severe form. With a career as a Marketing Manager, I’m hoping I can help raise the charity’s profile and ultimately awareness for the disease. I am also keen to support others through their journey.”

Tamsyn did all that and more, her family has joined in with lots of fundraising challenges and gets involved in International Myotonic Dystrophy Day within her local community in getting local landmarks to GO GREEN! She has also supported the charity with fundraising events and the very special family fun days that CureDM organise and facilitate for families and their loved ones. Not to mention, her partner taking his entries in GNR very seriously, and entertaining us all with his amazing ocostumes (yellow wiggle and Giraffe being our favourites so far!). With a lived experience for not only herself but her daughter too, Tamsyn helped support families through early diagnosis and the challenges which often face new families when welcoming a new baby into the world. We wish Tamsyn and her family all the best and she will continue to be a very important part of the CureDM community.

Liam will be staying on, and joining us for another 3 years in his second term as a Trustee. We have decided that for now CureDM will not be advertising for another official trustee, but we have plans for other ways in which people can support the Charity going forward – watch this space for more on that very soon. If you feel would like to support or volunteer within the charity then please do reach out.

Thank you

Thank you so much for reading this months blog. I have really enjoyed writing it and touching on new subjects and exciting events. I hope you have all enjoyed reading it and I hope it has been informative and interesting for you all. The year is already flying by and I am sure we will be welcoming the spring flowers and brighter mornings very soon. Please come back to have a look at February’s blog.

Thank you – Becky x