Muscular Dystrophy UK

“Of the places I’ve been, I’ve found Canada to be one of the most accessible.” ✈️

Joe has explored places like Kenya, Greece, Hong Kong, and Canada as a wheelchair user. While the journeys weren't always easy, they were always worth it.

Canada, in particular, stands out for its accessibility. From Ontario’s accessible train services to Alberta’s smooth city infrastructure and beautiful outdoors, it’s a place he highly recommends.

Joe shared some invaluable tips on flying as a wheelchair user—don’t miss out on his insights and stories from his travel adventures! Read more here: https://loom.ly/ZUB0fhc

We’re delighted to announce that we’ve appointed Andy Fletcher as our new Chief Executive. Andy joins from Together for Short Lives, the UK charity for children’s palliative care, where he is currently Chief Executive.

At Together for Short Lives, Andy has led significant growth in the charity’s impact and income, extending support for families and professionals, supporting quality improvement in palliative care and successfully advocating for better funding.

We look forward to welcoming Andy to the team in November.

Read more here: https://www.musculardystrophyuk.org/news/andy-fletcher-appointed-new-chief-executive-mduk/

Children with muscle wasting conditions need the right care during emergencies, but not all A&E staff are trained to provide it.

If your local hospital has an A&E, tag them in the comments! ⤵️

Our CPD-accredited course is designed to give A&E teams the skills they need to support children who live with a condition properly.

Find out more: https://loom.ly/mi2c-M4

"Growing up, I remember my dad struggling with stairs and being in a wheelchair for the last 20 years of his life, but what I really remember him for is his humour, intelligence and love of sports."

In honour of Jeff, who lived with Becker muscular dystrophy and passed away in 2011, Matt, his son, took part in our Game On fundraiser.

As a keen online gamer, he organised one of the first-ever PCA Sim Racing 24-hour endurance races.

Joined by three fellow sim racing enthusiasts, they collectively raised an incredible £1,500 for our cause!

🕹️🏎️ Read the full story: https://loom.ly/gnMMpRQ

Inspired by the Olympics? 🏅

Then join us for a day of fun and inclusive sports on 24 August in Grangemouth!

We're teaming up with Scottish Disability Sport to bring kids with muscle wasting conditions an unforgettable experience!

Try out curling, powerchair football, boccia and so much more! ⚽

Find out more: https://loom.ly/LzihXUI

Help shape the future of Keir Starmer's government with our survey - your voice matters!

Time is running out to share your thoughts!

Take just a few minutes to complete our survey and tell us what the new government should prioritise in its first 100 days for those affected by muscle wasting and weakening conditions.

This is your chance to make a real impact—let's ensure your needs are heard loud and clear.

Send your thoughts today: https://loom.ly/2fqC80c

Robin Gibbs sparked a walking frenzy at his workplace, leading his team to walk over 5 million steps in support of us! 🚶‍♂️

Starting with a self-set challenge of 500,000 steps in a month to raise £500, Robin was inspired by his friend and colleague Sarah, who lives with muscular dystrophy. His enthusiasm caught on, and 11 colleagues joined in, racking up an incredible 5.1 million steps!

Together, they raised over £1,300 to help change the future of muscle wasting conditions. 🌟

Read their full story: https://loom.ly/Nqw5yiE

Our research in numbers 🎯

We're leading the charge in understanding and treating muscle wasting conditions!

Here's how we're doing it:

💡 Awarding 10 new grants annually: Empowering research teams every year to explore and innovate.
🔬 Breakthrough discoveries: Advancing knowledge to better manage muscle wasting conditions.
💊 New treatments: Supporting the development of cutting-edge therapies for better patient care.

Read more about our impact: https://loom.ly/IhJPnrE

"Having a muscle wasting condition has always impacted my life, especially moving to a foreign country."

Ben was diagnosed with Ullrich congenital muscular dystrophy at just 4 years old. When his dad got a job in Dubai, Ben and his family made the big move abroad. 🌍

Ben was "pleasantly surprised" by how easy things were in Dubai, calling it "completely accessible" everywhere he went. He got to visit the Burj Khalifa, explore on a desert safari, and even have fun at Legoland Dubai! 🏙️

After four years, Ben returned to the UK and faced the tough transition to secondary school. The adjustment was hard, but with our support, he found his rhythm and was happy to see that the UK had become more accessible during his time away.

Read Ben's story on our website: https://loom.ly/T7z6ipE

You have ONE WEEK LEFT to vote for Carmela's Stand Up To Muscular Dystrophy's Young Fundraiser Award for JustGiving Awards! 📣

At just 10-years-old, she's raised over a whopping £400,000 for us, after walking the catwalk, sporting events and bake sales!

Vote now: 👇
https://loom.ly/8KnvFsY

Voting is now open for the 2024 JustGiving Awards! Tell us who you think deserves to win a JustGiving Award.

Being a sibling to someone with a muscle wasting condition can be a challenging experience.

We know it can sometimes feel stressful and lonely. Our virtual therapy groups are here to bring you together with others who truly understand what you're going through. And you'll benefit from the support from a therapist in a confidential and welcoming space.

Join our next group: https://www.musculardystrophyuk.org/support/services/support-groups/virtual-therapeutic-support-group/

We condemn the recent racist violence across the UK.

We support everyone with a muscle wasting condition and their loved ones.

If you need support, call our free helpline at 0800 652 6352, open Monday to Thursday, 10 am–2 pm, or email us at [email protected].

Do you have a physical therapist, physiotherapist, occupational therapist, speech and language therapist or care advisor who helps you manage your condition? nurse or care advisor who helps you manage your condition?

Invite them to join our hybrid conference on neuromuscular care by tagging their practice!

Allied health professions like these play a crucial role in the healthcare system, helping to manage, treat, and and improving the lives of patients. This conference offers them the opportunity to gain knowledge from leading experts and learn from case studies help their skills and patient care strategies.

🔍 Key speakers will dive into topics such as:
- Respiratory care management
- Exercise and physical activity for neuromuscular conditions
- Myasthenia gravis insights
and much more...

Find out more and tell your clinicians! https://loom.ly/QHoGfFw

Allied Health Professionals Hybrid Conference 2024 - Muscular Dystrophy UK Join us for this cross-specialism hybrid conference for all allied health professionals with an interest in neuromuscular care

Join our Young Adult Monthly Catch-Up! This month, we're thrilled to welcome Cerys Davage, who will share her journey with limb girdle muscular dystrophy (LGMD) and discuss her podcast, Unbalanced.

Over the past year, this podcast has become a vital source of support and insight for those affected by LGMD and other neuromuscular conditions.

🗓 Thursday, 29 August
🕖 7 PM
📍Zoom

Sign up today: https://loom.ly/aNDjZ4U

"It’s an unrelenting disease that gets progressively worse."

Sophie was diagnosed with LGMD2i when she was 13. Now, a decade later, she's taking on an epic event to raise money for us and awareness about the condition.

Zip Slide the Clyde is her next challenge. At the end of the month, she'll be ziplining 100 feet above the River Clyde with eight friends and family members by her side.

Sophie has been dedicated to raising funds to make a meaningful impact on the lives of everyone living with a muscle wasting condition. She said: "I know that I’m doing something to help so that the charity can continue... funding research into treatments and hopefully a cure."

Read her story:
https://www.musculardystrophyuk.org/about-us/stories/detail/family-friends-zipslide-clyde-lgmd2i-awareness-fundraising/

Send a message of support to Sophie and her team ⬇️

For over 60 years, we've funded groundbreaking research, leading to advances that were unimaginable a decade ago.

Together, we are transforming the future of muscle wasting conditions. Here's how we're doing it:

🧬 Harnessing the power of genetics

🔬 Understanding underlying biology

👩‍🔬 Facilitating treatment development

Read more about our research achievements:
https://www.musculardystrophyuk.org/research/our-achievements/

"Muscular Dystrophy UK and the South East Wales Neuromuscular Team have been our lifeline over the last two years, and I’m sure they will be for many years to come." - Jan

Jan's granddaughter, Evie, was born nine weeks early and diagnosed with myotonic dystrophy. "Our world fell apart," she recalls.

In search for help, Jan reached out to health professionals in her area and connected with one who introduced her to Lucia, a member of our team. Together, we worked tirelessly to support her family. We assisted them in securing DLA and PIP, ensuring they received the maximum financial support.

"I don’t know where my family would be today without Lucia," Jan says.

Read the full story to learn more about how our support team is making a difference:
https://www.musculardystrophyuk.org/about-us/stories/detail/finding-hope-myotonic-dystrophy-muscular-dystrophy-uk-support/

**Trigger warning: Abuse ⚠️**

This , Ela shares her powerful story of escaping an abusive marriage while living with spinal muscular atrophy and raising a young son.

"When we had our beautiful son, I never expected my husband would hurt me. What started as financial abuse soon turned physical."

Ela left after six years and a fractured kneecap. Today, she and her son have a great life.

"If anyone is going through a similar situation, I hope my story helps you see that you are strong enough to get out, just like I was."

Read the full story:
https://www.musculardystrophyuk.org/about-us/stories/detail/overcoming-abusive-marriage-with-disability/

The CIFFERO clinical trial for DMD gene therapy has been cancelled.

The CIFFREO Phase 3 clinical trial was a global study that aimed to test if the gene therapy fordadistrogene movaparvovec was safe and effective for use in boys with DMD aged four to seven. This potential therapy aimed to deliver a version of the dystrophin gene, known as mini dystrophin, directly to muscle cells.

All boys who received the gene therapy will continue to be monitored, with their safety being the main priority.

Read more:
https://www.musculardystrophyuk.org/news/ciffreo-clinical-trial-dmd-gene-therapy-cancelled/

Finish the sentence with what you want people to know 🧡

Living with muscular dystrophy can lead to many misconceptions. Each person's experience is unique, and their needs may change over time. No two journeys are the same.

One thing is certain - we're always here to offer support!

Find out more:
https://www.musculardystrophyuk.org/support/

Being a dad to someone with a muscle wasting condition is a journey filled with unique experiences. 🧡

We know it can sometimes feel lonely. Our virtual therapy groups are here to bring you together with others who truly understand what you're going through. And you'll benefit from the support from a therapist in a confidential and welcoming space.

Join us and find the support you deserve. Sign up here:
https://www.musculardystrophyuk.org/support/services/support-groups/virtual-therapeutic-support-group/

In honour of , we’re excited to share some of our favourite quotes from our amazing community!

All year round, we highlight stories from individuals with lived experiences, their families, and supporters.

Do you have a story to share that you think our community will benefit from? Get in touch with our team:
https://www.musculardystrophyuk.org/about-us/stories/share-your-story/

Are you 7-17 years old living with Duchenne or Becker muscular dystrophy? Are you a parent or sibling of someone with Duchenne? Do you live with myotonic dystrophy (DM1)? 🌟

Research needs you! Browse opportunities on our community research hub*: https://www.musculardystrophyuk.org/get-involved/campaign/community-research-hub/

Other projects are also looking for people living with ANY muscle wasting condition to participate in research into exercise, mental wellbeing and social support.

Your participation drives research, contributes to our collective understanding, and can lead to real-world impact.

Browse all opportunities*: https://www.musculardystrophyuk.org/get-involved/campaign/community-research-hub/

*We are not affiliated with the conduct, outcomes, or data management of these third-party projects. Please review each project’s privacy policy and consent forms before participating.

We’re investing over £1 million into innovative research to change the future of muscle wasting conditions.

Thanks to our donors, fundraisers and community we've secured funding for groundbreaking research projects of up to £1million each over five years. These projects will transform the future of people living with muscle wasting and weakening conditions.

Together, we are stronger. Read more about the grant:
https://www.musculardystrophyuk.org/research/for-researchers/open-grant-calls/ -programme-grants-in-neuromuscular-research-2024

“Without robust rare disease education and training, and without knowing about the resources available to them, the odds are stacked against GPs” – The Doctor (2024, British Medical Association).

Our goal is to equip GPs with the knowledge to diagnose neuromuscular conditions quickly and accurately.

Know a GP who could benefit from learning more on the presentation and prognosis of the more common neuromuscular conditions in adults and paediatrics? Invite them to our CPD-accredited upskilling webinar! 📢

This is a unique opportunity to learn from Professor Tracey Willis, a leading Consultant Paediatric Neurologist at the Robert Jones and Agnes Hunt Orthopaedic Hospital and Birmingham Children’s Hospital.

🗓️ Date: Thursday, 19 September 2024
🕒 Time: 5 PM
📍 Location: Zoom

Tag your GP and encourage them to register now and take a step towards better patient care. Better more, your GP can earn 2 category 1 (external) CPD credits from Royal College of Physicians!

Find out more: https://www.musculardystrophyuk.org/get-involved/events/presentation-and-prognosis-of-neuromuscular-conditions/

“Since the recessions and cuts to public services, I’ve seen a massive downturn in what the NHS can provide. The average wheelchair they now offer is far from suitable..."

Sam, 38, was diagnosed with spinal muscular dystrophy type 3 and lost the ability to walk when he was around five years old. Now, he is a full-time wheelchair user, who needs 24 hour living care.

He said NHS wheelchairs didn't allow him to live an active or inclusive life.

He applied for a Joseph Patrick Trust and Spinal Muscular Atrophy UK SMArt Moves grant, and he received £2,500 towards a wheelchair, which we co-funded.

"I was elated when I found out I’d been accepted for the grant." He said he's excited to make memories with his loved ones and go through his long list of places to visit confidently.

Read Sam's full story:
https://www.musculardystrophyuk.org/about-us/stories/detail/new-wheelchair-joseph-patrick-trust-smart-moves/

Sophie Morgan's on Channel 4 highlighted the key issues disabled people face when they travel. Kiera's story is one of many.

Kiera flew to Poland for a holiday but left the airport "traumatised" after being told one of her mobility scooter batteries would be destroyed. Despite checking the regulations, she was “humiliated” when airline staff refused to allow her spare battery on board. “She repeatedly spoke down to me and said the decision was final… it was like she was telling someone to fly without one of their legs.”

Fortunately, a kind stranger travelling to the same destination offered to take the battery as hand luggage. "Why did I have to rely on a stranger... I was so upset by what I’d gone through," Kiera said.

Reflecting on the ordeal, she said: "It is exhausting to have to fight for your rights as a disabled person, and this could have been avoided with proper staff training."

Have you had a bad flying experience as a disabled traveller? Share your story in the comments.

"I proved everyone wrong, and I’m now a qualified vet working in Stirling."

Katrina, who lives with Bethlem myopathy, dreamed to be a vet. After moving halfway across the world to fulfil this passion, her journey to getting qualified wasn’t easy.

Convincing the Royal College of Veterinary Surgeons she could complete the course was just the start. "I knew what I was capable of and assured them I could do what was needed, even if I had to do it a little differently."

She began her studies and then sought out veterinary placements, facing new challenges along the way. Once again, she had to prove her worth, showing potential teams that her disability didn’t diminish her ability to contribute.

Though she always dreamed of working with farm animals, her condition has progressed, making that goal out of reach.

"I get tired more easily and my body is getting weaker, so being a farm vet just isn’t realistic anymore."

Read more:
https://www.musculardystrophyuk.org/about-us/stories/detail/becoming-vet-with-bethlem-myopathy/

"It was worth every ache and pain as that’s nothing compared to what those living with muscular dystrophy go through every day and we wanted to do our best to do them all proud!"

Liz Keenan and her three friends recently conquered our Pedal Paddle Peak challenge in support of Liz's three sons, who live with Duchenne muscular dystrophy.

"Between us, we’ve done everything from skydiving and zip wire challenges to running the Oxford 10k and London Marathon."

Their incredible efforts in their latest challenge raised an astonishing £4,220! 🎉

Read the full story:
https://www.musculardystrophyuk.org/about-us/stories/detail/fighting-for-james-joshua-myles-pedal-paddle-peak-challenge/