Muscular Dystrophy UK

Today we’re delighted to publish our 2023/2024 Impact Report. This past year, we came together as a community to ensure that everyone living with a muscle wasting or weakening condition receives the healthcare, support, and treatments they need to grow stronger—both mentally and physically. Our Interim Chief Executive, Wojtek Trzcinski, reflects on the accomplishments, successes and significant milestones we've achieved together over the last year. Read Wojtek's blog: https://loom.ly/ow5j8Us

"Almost a year into married life, I still don’t want it to be my husband doing this medical routine for me, so I need to think about who can do my regular chest checks as I don’t see medical staff that often." 🎗️ In honour of Breast Cancer Awareness Month, we want to share the experiences of Chloe Docker and Becca, who live with muscle wasting conditions. Chloe has visited a Breast Care Centre twice and has had to adapt her way of checking her breasts as her condition has progressed. 📅 Meanwhile, Becca has never been able to check her own breasts. She recently had an important conversation with her mum and offers valuable advice on how to approach carers for support. 💬 Read more in collaboration with CoppaFeel!: https://loom.ly/EC6gzNI #BreastCancerAwareness

Today is the launch of The Remarkable Life of Ibelin on Netflix and in cinemas! This film tells the amazing story of Mats Steen, a young gamer who lived with Duchenne muscular dystrophy. 🧡 Mats found a whole new world through his character Ibelin in World of Warcraft, allowing him to break free from his physical limitations and connect with people from all over the globe. 🌏 The film highlights the power of gaming to bring people together and show that even in tough times, we can find joy and connection. 🤝 Please note: This film is an inspiring story about friendship, strength, and how gaming brings people together. It follows a young boy with muscular dystrophy and shows how his journey affects his friends and family. While the story is uplifting and filled with hope, it also deals with the topic of loss. We hope this movie gives comfort and inspiration to viewers, but be prepared — it might bring up some strong feelings. #TheRemarkableLifeOfIbelin

Last week, an amazing team of 15 adventurers successfully scaled Africa’s highest free-standing mountain, Kilimanjaro, raising an impressive £86,078 so far (including £11,597 in GiftAid). ⛰️ These funds will enable groundbreaking research and provide life-changing support to our community affected by muscle wasting conditions. Thank you to this amazing team for your hard work, and to all those who contributed — their efforts are helping us take real steps toward a future with better treatments, and more support.

What happens when the commercial property sector hits the football field? 🤷 We found out at the annual Marchmont Investment Management 5-a-side tournament, where over £24,000 was raised to change the future of muscle wasting conditions. This month, 210 members gathered at Powerleague Battersea, where 30 teams competed fiercely for the trophy, generously sponsored by Helme + Partners . The money raised will support the 110,000 people affected by muscle wasting conditions. Congratulations to our finalists— Knight Frank, INVESCO, Curo Construction ltd, and CBRE Investment Management, with CBRE Investment Management taking home the title! Thank you to everyone involved, and we hope to see you next year. If your company wants to host a supportive event, we’d love to help. Please get in touch—together, we’re stronger. #StrongerTogether

Today, one of our longest-standing corporate partners, CeX Webuy.com, announced they have raised an incredible £200,000 for us through donations and their customer trade-in scheme. We are beyond grateful for their ongoing support!   To mark this milestone, CeX has released a special video interview featuring actor and voiceover artist Ralph Ineson. 🎬🎮   In this interview, our Corporate New Business Officer, Martin Hywood, talks to Ralph about everything from video games and technology to his unforgettable moments in Star Wars and Harry Potter.   Watch the interview and read the full story here: https://lnkd.in/gA-EFayu   #CorporateSocialResponsibility

Earlier this month, the "Jon Richardson and Friends" comedy show returned to Aylesbury Waterside Theatre for a night of non-stop laughs— and raised over £43,000! Huge thanks to the amazing comedians Suzi Ruffell, Kojo Anim, Ivo Graham, Tim Vine, Louise Young, and Matt Forde for keeping us laughing all night! 🙌 And a special shoutout to Martin Hywood and Jon Richardson for making it all happen. Thank you to everyone who came, donated, and supported us. Together, we're helping the 110,000 people in the UK living with muscle wasting and weakening conditions. Read more: https://loom.ly/QhpUv5c

We’re supporting groundbreaking research on #CMT-SORD! 🧬 Dr James Sleigh and his team at UCL are developing a mouse model of SORD neuropathy to test promising gene therapies. This could be a major step forward in finding effective treatments for SORD neuropathy. Read more this #CharcotMarieToothAwarenessMonth: https://loom.ly/y80wx0A #GeneTherapy #Neuropathy #MedicalResearch #CMT

🎉 Huge congratulations to Ann Hughes for being awarded the British Empire Medal (BEM) 🎖️! We’re incredibly proud of her remarkable achievement and dedication. Ann’s son, Colin, lives with Limb Girdle Muscular Dystrophy (LGMD), and due to his condition, the ceremony was held at his home in London. Ann shared: “Normally, BEM medal ceremonies are held locally, but since our surviving son, Colin, can no longer travel home to Wales due to the effects of muscular dystrophy, the Palace kindly arranged for the medal presentation to take place at his home in London, allowing us to be together as a family. "I am very grateful to the Deputy Lord Lieutenant of Dyfed, Kit Lewis, for presenting me with the medal. It was a great honour and a special occasion I will never forget. Thanks also go to all the committee members and volunteers of the Aberystwyth Muscular Dystrophy UK branch who supported me in our fundraising efforts over the past 50 years.” We are so honored to share this milestone with her. 💙

This #WorldMenopauseDay, we're shedding light on how menopause impacts those living with muscle wasting or weakening conditions. 💪🌸 At 39, Deepika began experiencing perimenopause and noticed her condition rapidly worsening as a result. "There’s a tendency for medical professionals to put all my symptoms down to my disability, but I know my weakness is directly related to menopause and it’s hard to not be listened to." Deepika found support in our Women's Health WhatsApp Group, where she appreciated connecting with others facing similar challenges in a safe space. 🤝💬 Read Deepika's full story: https://loom.ly/PcZgEYQ