Tag: Muscular Dystrophy UK

Call for people living with muscle wasting and weakening conditions to join free charity event

  • Charity invites people across Scotland living with muscle wasting and weakening conditions to join the free in-person event.
  • Muscular Dystrophy UK is hosting the Scottish conference in Stirling.
  • Hear from the charity and experts within the neuromuscular community on how to live well.

Muscular Dystrophy UK is calling on people living with a muscle wasting or weakening condition, their families and carers to join a free in-person event open to everyone across Scotland and beyond.

The Muscular Dystrophy UK’s Scottish conference, taking place on Saturday 23 March 2024, is organised by the leading charity for more than 110,000 children and adults in the UK living with one of over 60 muscle wasting and weakening conditions.

Attendees will hear from the charity about advice and support services on offer and from experts on topics including emotional and mental wellbeing, physiotherapy, occupational therapy, education, self-directed support and from real-life experiences.

Jacqueline Munro, Head of Regional Support, Outreach, and Information at Muscular Dystrophy UK said: “We’re delighted to be able to host the Muscular Dystrophy UK’s Scottish Conference and we look forward to welcoming people from across Scotland.

“It will be a great opportunity to gain useful insights and connect with other people in the muscle wasting and weakening community, to share stories, experiences, tips and advice. Secure your place by signing up now.”

The event will run 9.30am – 5.00pm at Forth Valley College, Stirling Campus, Stirling, FK8 1SE.

Spaces are limited, so sign up today: musculardystrophyuk.org/ScottishConference 

Lunch is included and the venue has a Changing Places toilet facility on site.

The charity will be hosting information stands from other organisations including Scottish Disability Sports, Housing Options Scotland and SDS Forth Valley.

The information day is part of a series of events happening across the UK. Upcoming events will be happening in Cardiff, Wales, on Thursday 18 April 2024, with previous events taken place in England and Northern Ireland.

The charity also hosts a network of local groups, known as Muscle Groups, who meet regularly across the UK in Scotland, England, Wales and Northern Ireland.

Contact Muscular Dystrophy UK with any information days enquiries on  infoday@musculardystrophyuk.org

For more information about Muscular Dystrophy UK visit: musculardystrophyuk.org 

or call our free helpline on 0800 652 6352 (open Mon – Thu 10am – 2pm).

Music Producer doesn’t miss a beat for Muscular Dystrophy UK

  • Scottish music producer is calling on people across Scotland living with muscle wasting and weakening conditions to join the free in-person event.
  • Sanjeev will share his ‘real-life’ experience of living with muscular dystrophy and why he’s supporting Muscular Dystrophy UK.
  • Join Sanjeev and the charity at the Scottish conference in Stirling on Saturday 23 March 2024.

Sanjeev Mann, a Scottish music producer, promotor and activist is calling on the muscle wasting and weakening community to join him at an upcoming charity event.

Sanjeev, aka Supermann on da beat, 27, was diagnosed with Duchenne muscular dystrophy in 2003, aged six. Sanjeev is encouraging other people living with a muscle wasting or weakening condition, their families and carers to join a free in-person event open to everyone across Scotland and beyond.

The Muscular Dystrophy UK Scottish Conference, taking place on Saturday 23 March 2024, is organised by the leading charity for more than 110,000 children and adults in the UK living with one of over 60 muscle wasting and weakening conditions.

Having worked with artists from all over the world, Sanjeev spreads awareness about making the music scene more accessible, and how others with disabilities can follow their creative passions.

Sanjeev, born in Glasgow but now lives in Ayr, said: “Living with Duchenne muscular dystrophy has its ups and downs, but for me it has definitely had more ups. I’m glad I was given this path.

“I can’t imagine my life without my best friends who I’ve met because I have Duchenne. And I probably wouldn’t have started making music if I hadn’t been shielding during the pandemic. I’m proud to be disabled and a disabled artist who shares my music with the world.”

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Sanjeev Mann calling on people across Scotland living with muscle wasting and weakening conditions to join Muscular Dystrophy UK Scottish Conference on 23 March 2024.

Attendees will hear from the charity about advice and support services on offer and from experts on topics including emotional and mental wellbeing, physiotherapy, occupational therapy, education, self-directed support and from Sanjeev about his real-life experiences.

Sanjeev who is looking forward to speaking at the Muscular Dystrophy UK Scottish Conference about how music can help our mental wellbeing continued: “I would like my speech to hopefully give new individuals with muscular dystrophy and their families hope for the future. We can be happy and live our best life. I want people to see that having Duchenne doesn’t mean you can’t have dreams. Anything is possible, and if there’s something you really want to do, go for it. You can always find a way.”

“My biggest inspiration to be a prominent figure in the music scene, is the hope that others with Duchenne will see me and think I could do that too. There is still a huge unconscious bias towards us that means people have low expectations of disabled people. And that can mean we end up having low expectations of ourselves. But I’m challenging that, and I hope others will join me to push change.”

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Photo credit @ Muscular Dystrophy UK

The event will run 9.30am – 5.00pm at Forth Valley College, Stirling Campus, Stirling, FK8 1SE. Spaces are limited, so sign up today: 

musculardystrophyuk.org/ScottishConference. 

Lunch is included and the venue has a Changing Places toilet facility on site.

The information day is part of a series of events happening across the UK. Upcoming events will be happening in Cardiff, Wales, on Thursday 18 April 2024, with previous events taken place in England and Northern Ireland.

The charity also hosts a network of local groups, known as Muscle Groups, who meet regularly across the UK in Scotland, England, Wales and Northern Ireland.

Learn more about Sanjeev’s inspirational story musculardystrophyuk.org/Sanjeevor contact Muscular Dystrophy UK with any information days enquiries on infoday@musculardystrophyuk.org

For more information about Muscular Dystrophy UK visit musculardystrophyuk.org 

or call our free helpline on 0800 652 6352 (open Mon – Thu 10am – 2pm).

Getting into the Spirit of Christmas

  • A night of festive cheer aims to raise funds for Muscular Dystrophy UK
  • Call for local community to join the festivities organised by Stagecoach Performing Arts
  • Helping to support groundbreaking research and life changing support

People in Glasgow and surrounding areas are invited to the Spirit of Christmas annual concert, an evening of uplifting performances, full of festive cheer, on Friday 1 and Saturday 2 December.

The Spirit of Christmas annual concert will take place at Broom Parish Church, Newton Mearns, hosted by Stagecoach Performing Arts. This year will be full of festive songs brought to you by the students of Stagecoach Glasgow.

Gordon Smith, ex-professional footballer and Muscular Dystrophy UK’s ambassador, will be addressing the audience on the Saturday evening to sing with the children.

Jodie Whitham, Muscular Dystrophy UK’s Regional Development Manager for Scotland and Northern Ireland said: “The Spirit of Christmas always feels like the start of the festive season.

“What a wonderful way to get into the Christmas spirit, with a night of uplifting music, in such beautiful surroundings.

“It’s truly joyful, with so many people giving their time to help us raise awareness and vital funds for people living with muscle wasting and weakening conditions. Make sure you don’t miss out on these magical nights!”

Tickets will be available to purchase on the door on each of the evenings.

  • Adult: £10
  • Child or concession £5
  • Family (two adults and two children) £25

For more information on Muscular Dystrophy UK visit musculardystrophyuk.org or call the free helpline on 0800 652 6352 (open Mon – Thurs 10am – 2pm). 

Grab your Kilt and sign up to Kiltwalk!

Muscular Dystrophy UK (MDUK) is calling for everyone in and around Edinburgh to take part in Kiltwalk on 17 September 2023 to support those in Scotland who have a muscle-wasting condition as well as family, friends and colleagues who might be affected.

The sooner people are able to sign up, the sooner you can start fundraising! Rare Disease Day is Tuesday 28th February, and is a day to raise awareness of conditions like Muscular Dystrophy where there are 110,000 children and adults affected which means they life is limited. We’d love if you did something special this Rare Disease Day and register to walk for muscles.

To register for Kiltwalk and get your FREE place please go to:

 https://musculardystrophyuk.org/get-involved/events/edinburgh-kiltwalk-2023.

Jodie Whitham, MDUK’s Regional Development Manager said: “We rely on the generosity of our supporters, local businesses, and communities every year. Last year we raised more than £6000 from Kiltwalk and hope 2023 can be even bigger.”

For further information and to request your free t-shirt and fundraising pack contact Jodie on j.whitham@musculardustrophyuk or call on 07771 374839.

Edinburgh woman with muscle-wasting condition to host fundraiser at the Scottish National Portrait Gallery

  • Art enthusiast Alexandra Gardyne is the subject of exceptional pieces by well-known Scottish artist Damian Callan, which will be displayed at the fundraiser at the Scottish National Portrait Gallery
  • Alexandra lives with Facioscapulohumeral muscular dystrophy, a condition that gradually weakens the muscles, and wants to change the perceptions that others may have when they see someone with muscular dystrophy
  • Visitors can expect to view and purchase unique pieces reflecting many artists’ perception of muscular dystrophy and a full range of the artists’ own portfolio of work
  • Artists include: Damian Callan, Jennifer Illustrated Lab, Ritchie Collins, Eleanor Cunningham, David Schofield, Lucy Campbell. Photographer Maxine Ragni
    Alexandra is hosting the fundraiser to raise money for Muscular Dystrophy UK

Art enthusiast Alexandra Gardyne, who lives with Facioscapulohumeral muscular dystrophy, is the subject of exceptional work by Damian Callan, one of Scotland’s well-known artists.

The work will be shown as part of a one-off exhibition on the evening of 21 May she has organised at the Scottish Portrait Gallery to fundraise for Muscular Dystrophy UK.

The evening will begin at the Scottish National Portrait Gallery’s Grand Hall. Drinks will be available from the Heritage Portfolio Company while visitors can meet Alexandra and attending artists.

Damian, a figurative artist whose work reflects that of Degas and Renoir, said he found an extraordinary determination in the way Alexandra deals with the challenges of her condition.

“For many years I have worked on depicting the characteristic movements of sports figures and dancers. Alexandra asked if I would consider working with her with a view to capturing the particular ways in which she moves and thus possibly offering an insight into the experience of living with muscular dystrophy.

“Through a process of drawing her in the studio and photographing her walking in the Botanic Gardens, I began with a series of charcoal and pastel studies and developed these into paintings. I have attempted to produce positive and uplifting images that recognise an extraordinary dignity and determination in the way Alexandra deals with the challenges of this condition.”

Register to attend the event: https://www.eventbrite.co.uk/e/perceptions-life-with-muscular-dystrophy-tickets-221911462157

Get to know Alexandra and view some of the artwork: Instagram.com/ali.artspoken

Alexandra – a 35-year-old mum from Edinburgh – said: “This is a fantastic opportunity to raise awareness and educate about muscular dystrophy through art. I am delighted that so many artists have jumped on board.

“There will be a good range of pieces, with and without attachment to muscular dystrophy, so the mix is eclectic enough to suit people’s style and pockets.

“I have always found art stimulating and exciting, and enjoyed galleries and local shows. I used to do a lot of arts and environmental workshops in my 20s. I love creating space for other people’s creativity to flourish and be appreciated.”

Alexandra was diagnosed with Facioscapulohumeral muscular dystrophy when she was 22. “I was symptomatic since toddlerhood but only diagnosed in my twenties when I could no longer run, kept tripping on the stairs and always feeling exhausted.

“I find it very hard to live with my condition but I am passionate about connecting with people and making things happen. I am trying to change the perceptions that others may have when they see someone with muscular dystrophy.”

Ritchie said: “When I met Alexandra and she told me about the Muscular Dystrophy UK charity, I thought it was a great idea to host an evening of art in the magical setting of the National Portrait Gallery.

“It’s an honour to be able to draw awareness and raise funds for such a great charity through my work.”

Julia Smith, senior manager, regional development at Muscular Dystrophy UK said: “Alexandra has put a lot of time and effort into this fundraiser and we are so grateful.

“We look forward to seeing photos from the event and expect it will be a fun and relaxed evening. Any funds raised will go towards Alexandra’s family fund to to raise essential funds for research into Facioscapulohumeral muscular dystrophy.”

Alexandra added: “Muscular Dystrophy UK is a charity with a great level of experience and determination in their mission and the staff, and that always comes across. They have created many opportunities for people with the conditions.”

The venue is fully wheelchair accessible.

Charities urge SMC to approve treatment for life-limiting condition

A group of charities is urging for the approval of a drug that can treat an underlying genetic cause of a life-limiting muscle-wasting condition.

Duchenne muscular dystrophy (DMD) primarily affects boys and causes muscles to weaken and waste over time, with most of those affected needing to use a wheelchair by the age of 12. The life-limiting condition also causes other severe health problems to the heart and breathing muscles.

The drug Translarna, however, can help treat cases of a version of Duchenne that is caused by nonsense mutations.

Today, Muscular Dystrophy UK, Action Duchenne, Duchenne Family Support Group and Duchenne UK are appearing before the Scottish Medicines Consortium (SMC) to represent patients who could benefit from Translarna and to seek its approval for use on the NHS in Scotland.

In its joint submission to the SMC ahead of today’s meeting, the charities outlined evidence from a survey conducted earlier this year.

They provided evidence that highlights clear improvements to quality of life reported by those receiving the drug. Significantly, many families of children receiving Translarna say they retained the ability to walk for longer than expected, and that this gave their child greater independence to complete daily tasks and take part in activities with friends.

Families also reported huge behaviour improvements at school and home, as well as positive mental health outcomes.

If SMC approves the submission, Translarna would be the first treatment routinely available through the NHS in Scotland that addresses an underlying genetic cause of Duchenne muscular dystrophy.

One parent who took part in the survey, and whose thoughts were included as evidence in the submission, explained: “For our son knowing that he has a medication to help his muscles is a massive boost to him.

“We believe that every time we receive our Translarna it lifts his spirits in this fight. We never for a moment take for granted how lucky we are to be receiving this drug and feel it’s something in our corner as we face this battle head on.”

If approved, Translarna would be given in addition to the current standard treatments on the NHS in Scotland.

A spokesperson for the four charities said: “Every day is a race against time to slow down Duchenne muscular dystrophy, a progressive condition that robs children of their ability to walk and their independence.

“Muscular Dystrophy UK, Action Duchenne, Duchenne Family Support Group and Duchenne UK are pleased to have represented the voices of patients in our joint submission to the SMC.

“We believe our submission highlights both the physical and mental health benefits of Translarna, a drug that has the potential to improve lives for so many families living with Duchenne. We very much look forward to hearing the SMC committee’s thoughts on our submission.”