Report reveals powerful community impact through virtual Muscle Dream interventions, that help reduce isolation

Reducing social isolation during the COVID-19 pandemic: The power of community engagement and virtual Muscle Dreams.

For children and young people affected by muscular dystrophy or allied neuromuscular conditions, it is all too easy to become socially excluded. Reducing isolation and fostering a sense of belonging has always been at the heart of our work and, as the country locked down in the face of the COVID-19 pandemic, this became more important than ever.children-in-need

Last year, we were delighted to receive an award from the BBC Children in Need’s COVID Next Steps Programme, which we used to support our virtual Muscle Dream activities and vital community engagement work. We delivered the programme between January and March 2021 and are now pleased to share a report revealing the positive impact it has had on our community.

The full report is available HERE if you would like to read it in full.

The programme began with our Community Engagement Lead personally contacting over 70 vulnerable families to find out how they were coping and to offer practical support and mental health signposting. All our families also received a copy of a book called The Boy, the Mole, the Fox and the Horse, written by illustrator and author Charlie Mackesy. Featuring heartfelt conversations between four unlikely friends, this thought-provoking book offers comfort and inspiration whether you are 8 or 80. Virtual chats with our Chief Muscle Warrior were also available for struggling families, offering much-needed inspiration during difficult times.

muscle-deam-chart

The pandemic may have temporarily halted our in-person Muscle Dreams programme, but our #powerof657 mission prevailed. During this time, three virtual Muscle Dreams were delivered, focusing on Art, Music and Laughter, respectively. These brought joy and hope to the lives of 28 children or young people, with significant progress reported by the majority of those who took part.

Everyone knows that laughter can improve our health and well-being and we certainly saw some striking benefits following our Laughter Muscle Dream. When we asked our recipients to put a number to their feelings, average scores were only 5.9 out of 10 before the Muscle Dream began. After approximately 1.5hrsxuberant laughter, this increased to an amazing 9.3.

Our charity has long understood the value of fostering a sense of belonging among the children and young people that we work with. All our beneficiaries and their families are welcomed into our Muscle Warrior tribe, with access to our online community and social media channels. As one parent put it:

“Our child felt loved, appreciated, noticed, nurtured and part of the tribe. Our child is feeling so much more positive, and his confidence has definitely been uplifted. We so feel part of the Muscle Warrior tribe now!”

Throughout the programme, the Community Engagement Lead maintained regular contact with families, providing information and encouraging the children and young people to engage with our virtual events. This vital ongoing support was much appreciated, as described in this feedback from one of our families:

“So appreciative of the Muscle Help Foundation charity to check in on us and be thought of during this time. Everyone has been so supportive”

Restrictions have now been lifted and we have begun to take some tentative steps towards restoring our in-person programme activities. However, many of our children and young people remain vulnerable and our #powerof657 mission remains at the forefront of our work.

Michael McGrath, CEO of the Muscle Help Foundation charity said:

“As of August 2022, 426 children and young people from across the UK with different variants of muscular dystrophy have experienced the joy and magic of a Muscle Dream intervention, but there are another 231 waiting for their moment in time. Whilst the past three years have been incredibly challenging for our small charity, we’ve survived a global pandemic and currently, we’re just about surviving the economic realities and instability brought about by escalating living costs and a potential recession.

It isn’t getting any easier which is why we desperately need more support so we can keep pushing towards our 657 mission. If you’re able to fundraise for us or if you or your business would like to cover the cost of one or more future Muscle Dreams or if you want to donate, please get in touch”.

Muscle Help Foundation (MHF) – we are a small charity delivering highly personalised, transformational interventions in the UK called Muscle Dreams for children and young adults (8-28yrs) with the muscle wasting condition, Muscular Dystrophy (MD). Uplifting, joyful and often cathartic in nature, MHF’s academically validated work and impact is rooted in the idea that well executed, shared experiences can be powerfully transformative in nature.

2022 Barry O’Leary Services to Powerchair Football Award sponsored by Muscle Help Foundation charity

For the 2nd year in a row, the Muscle Help Foundation charity was very proud and delighted to sponsor the 2022 Barry O’Leary Services to Powerchair Football Award. Nominations are received through The Wheelchair Football Association and then considered by a select panel led by the Muscle Help Foundation.

After reviewing several incredibly worthy nominations in advance of the Awards Evening with Adam McEvoy, National Development Manager of The Wheelchair Football Association, our CEO Michael McGrath was left with the unenviable task of not only identifying one winner (Mark Kerrison, pictured below, holding shield – photo credit: Alexandra Johnson Photography) but also providing a specially recorded video message that included the Award winners name, announced by The WFA at their End of Season Awards Evening on Sat 25th June 2022 at Derby Football Club’s Pride Park Stadium. This was just two weeks after the televised WFA Cup Final at St George’s Park.

The event celebrated a fantastic year of Powerchair Football, including achievements from The WFA’s National League Premiership & Championship divisions, together with our countries triumphant European Powerchair Football Association (EPFA) Home Nations Cup campaign and more.

The Muscle Help Foundation charity has over many years directly supported its very own Muscle Warriors Powerchair Football Club, part of the Aspire Hub. The Barry O’Leary Services to Powerchair Football Award, was created by The WFA to recognise individuals that have contributed substantial time, expertise and dedication to help develop and grow the sport of Powerchair Football. Read more about Barry O’Leary here who was the Muscle Warriors Powerchair Football Club Manager, point-man and an inspirational pillar for many years within the Powerchair Football community.

powerchair football awards

Michael McGrath, CEO of the Muscle Help Foundation charity was moved when he read all of this year’s Award nominations. He said:

“Mark Kerrison was incredibly deserving of this prestigious award. I know that Barry O’Leary would most certainly approve. Thank you Mark for all that you do, for your selfless dedication to the sport of powerchair football and for your generosity of spirit in never ceasing to help others!”

The Muscle Help Foundation is so very proud to sponsor of this special Award and if we can, the charity will continue to look for ways to support one of the UK’s fastest-growing, most popular disability sports.”

Muscle Help Foundation (MHF) – a small charity delivering highly personalised, transformational interventions in the UK called Muscle Dreams for children and young adults (8-28yrs) with the muscle wasting condition, Muscular Dystrophy (MD). Uplifting, joyful and often cathartic in nature, MHF’s academically validated work and impact is rooted in the idea that well executed, shared experiences can be powerfully transformative in nature.

The Wheelchair Football Association (The WFA) – believes that everyone can play a part in changing lives through the power of football. Powerchair Football is a unique sport that provides opportunities for people with a high level of impairment to access the game of football.  It is the only active team participation sport for people who use electric wheelchairs.

The sport is fast-paced, dynamic and very enjoyable to watch.  Due to the unique nature of the Powerchair Football, it allows all ages, disabilities and both genders to compete together. Powerchair Football enables disabled people to take part in regular activity and provides them with competition – something that the majority will never have, or rarely, experienced before due to their impairment. As a result, it builds key life skills such as teamwork and communication.

Powerchair football creates a great social opportunity for players and their families as they experience the highs and lows of participating in the nation’s favourite sport. It brings strangers together, many of whom have similar stories and life experiences, creating friendships and bonds which last a lifetime.

www.thewfa.org.uk

MHF Supports Charity Friends DFSG on Anniversary Weekend with Manchester City FC Etihad Stadium Tour

Celebrating their 35th anniversary, charity friends Duchenne Family Support Group (DFSG) arranged a weekend in Manchester, staying at the stylish 4 star Hotel Brooklyn that included various activities including gaming and a gala dinner. Additionally, a special trip was arranged to Manchester City Football Club that saw 11 adults, 24 young people (under 18yrs) and 20 registered carers, split into three groups, to enjoy a tour of the Etihad Stadium on Sat 19th Feb 2022 funded by a donation from the Muscle Help Foundation.

 

The DFSG charity’s Development Officer, Phillippa Farrant, kindly shared the following summary of the weekend below:

“The Hotel Brooklyn, which is situated right in the centre of Manchester, was selected as the group’s base for the weekend. It’s a relatively new hotel and although it’s fully equipped to meet the needs of disabled patrons, it’s designed not to appear too clinical, with many clever, yet hidden adaptations. All the rooms were large, with space under the beds for mobile hoists. In addition, there were two rooms with ceiling track hoists that accommodated the two young men who attended. It was a truly fantastic hotel and was staffed by an amazing team for whom nothing was too much trouble.

Saturday morning began with typical Mancunian weather, but despite the rain, many of the group set off for a tour of the Etihad Stadium. The boys were very excited about this and, although our trip was somewhat hindered by the fact it was a match day, it was overall a very successful visit.

Later that day, the boys took part in a gaming party fuelled by a large supply of Haribo. Unsurprisingly this was a huge success and very popular with the children. The parents were also impressed with how quickly and easily the boys put the equipment down when asked to, not something that typically happens at home!

Saturday concluded with an anniversary dinner. A member of the Duchenne Family Support Group (DFSG) gave a short talk and reminisced about the history of the group and how it had grown since its early days. This was followed by a 1987 themed quiz, with drinks and chat continuing long into the evening.

Over the past 35 years, the Duchenne Family Support Group (DFSG) has played a vital role in improving the lives of families affected by Duchenne Muscular Dystrophy (DMD). Weekends away, such as this one, are crucial in helping families make new friends, including future support for the parents, new gaming buddies for the boys, and new friends for the siblings”.

About Duchenne Muscular Dystrophy (DMD)

DMD is a muscle-wasting condition and usually affects only boys. At any one time, there are approximately 2,500 boys and young men known to be living with the condition in the UK. DMD causes progressive muscle weakness and means that those affected will lose their ability to walk and use a wheelchair to move around. DMD also causes significant heart and breathing problems and regular medical appointments are essential to ensure early changes are promptly treated.

Michael McGrath, founder and CEO of the Muscle Help Foundation charity said:

“When I heard that DFSG were celebrating their 35th anniversary in Manchester, I knew that if there was an opportunity to contribute in some small way for the benefit of the children, young adults, their families and carers attending, then MHF would do so – as a small family-centred charity, we were really delighted to provide support in this way. We wish our friends at DFSG continued success in their vitally important work in the future”.

About the Muscle Help Foundation (MHF)

MHF is a small charity delivering highly personalised, transformational interventions in the UK called Muscle Dreams for children and young adults (8-28yrs) with the muscle wasting condition, Muscular Dystrophy (MD).

Uplifting, joyful and often cathartic in nature, MHF’s academically validated approach is rooted in the idea that well executed, shared experiences can be powerfully transformative in nature.

Zoom call from former Red Arrows pilot surprises Amandeep in Glasgow hospice, MHF’s 425th Muscle Dream beneficiary

Friday 18th March was a very special day for a young man from Glasgow who received the surprise of a lifetime thanks to the Muscle Help Foundation charity, the RAF Benevolent Fund, and the Prince and Princess of Wales Hospice.

Pictured below, twenty-year-old Amandeep has Duchenne muscular dystrophy (DMD), the most severe type of muscular dystrophy. As a lifelong lover of the RAF and aviation, Amandeep dreamed of becoming a pilot and was devastated that DMD thwarted his ambitions.

To help fulfil his wish, Dr Sheonad Laidlaw, Specialist Palliative SAS Doctor for the Transition & Young Adults Service at The Prince & Princess of Wales Hospice, nominated Amandeep for a Muscle Dream. The charity’s CEO Michael McGrath, a DL in Hertfordshire, reached out to Lord Hugh Trenchard to assist, a fellow DL in the county and whose grandfather was the founder of the Royal Air Force Benevolent Fund.

The RAF Benevolent Fund nominated supporter Mike Ling, the Red Arrow’s longest standing pilot and current Blades pilot.

Former Red Arrows Pilot Zoom Call Surprises 425th Muscle Dream Beneficiary In Glasgow Hospice

Amandeep got to virtually experience the life of a pilot by meeting Mike (pictured above) over Zoom and hearing about his 10-year career with the Reds. During the session, Amandeep was also presented with a gift box including his own set of wings, generously donated by Gavin Davey, Area Director for Scotland at the RAF Benevolent Fund and former RAF helicopter pilot.

Amandeep said: “What an amazing experience. It was a privilege to meet everyone and receive the wings. Thank you to everyone for organising this surprise.”

Mike Ling is no stranger to charity, having been supported by the RAF Benevolent Fund following a mid-air collision with another Red Arrow jet in 2010. He spent weeks in hospital, with injuries including badly damaged legs, arms, substantial burns, a dislocated shoulder, lacerations on his face and damaged lungs. The Fund provided a powered wheelchair which helped Mike regain some independence and allowed him to take care of himself again.

Mike Ling said: “I was truly delighted to meet Amendeep virtually and to talk to him about flying and the Red Arrows. Despite the restrictions placed on him by DMD, Amendeep is a very cheerful young man with a positive mindset, and it was a real pleasure to speak to him as a huge fan of aviation. I’m grateful to the Muscle Help Foundation charity and the RAF Benevolent Fund for inviting me to be a part of Amandeep’s Muscle Dream experience.”

DMD is a muscle-wasting condition and usually affects only boys. At any one time, there are approximately 2,500 boys and young men known to be living with the condition in the UK. DMD causes progressive muscle weakness and means that those affected will lose their ability to walk and use a wheelchair to move around. DMD also causes significant heart and breathing problems and regular medical appointments are essential to ensure early changes are promptly treated.

Dr Sheonad Laidlaw added: “The Young Adult Service at The Prince & Princess of Wales Hospice (Glasgow) has supported Amandeep for a number of years, but since the beginning of the pandemic Amandeep has shielded and this support has been needed more than ever.

Sometimes this support is simply listening and talking as he was socially isolated; I learned more about his dreams and aspirations, and this included his childhood dream to be a RAF pilot.

With his 21st birthday approaching, I wanted to nominate Amandeep for a Muscle Dream as a celebration of all that he achieves daily and to remind him that there is a vast world outside his room waiting for him to explore.”

The Muscle Help Foundation charity’s goal is to deliver 657 Muscle Dreams, one life-changing experience for every muscle in the human body. Amandeep’s virtual Muscle Dream was the 425th intervention, leaving a further 232 to deliver.

Michael McGrath, founder and CEO of the Muscle Help Foundation charity said: “When Amandeep’s Muscle Dream nomination arrived in the charity’s inbox just after Christmas last year, I was struck by two things – firstly, how the cruelty of his debilitating, life-limiting condition has robbed him of his dream of being an RAF pilot, and secondly, his passion and love of flying. Nominated by specialist palliative care GP Dr Sheonad Laidlaw, it became clear in our communications that to ‘earn his wings’ was a life goal. The rest as they say is history.

Huge thanks to the RAF Benevolent Fund, to Mike Link and Gavin Davey for giving their time to support what was a wonderful virtual exchange – Amandeep’s precious smile said it all! The RAF motto ‘Per Ardua Ad Astra’ translated meaning “through adversity to the stars” certainly rings true.

I’d also like to express the charity’s enormous gratefulness to EasyJet pilot and artist Darius Rowland who joined the Zoom call, generously gifting a stunning canvas painting of a spitfire flying over Beachy Head. Thanks also to David Strudley CBE FRSA, a long-time friend of the charity, who reached out to Flt Lt Ben Davey of II(AC) Typhoon Squadron from RAF Lossiemouth and who provided some amazing memorabilia including a poster of a magnificent typhoon FGR4 jet signed by all members of the II(AC) squadron. The generosity of spirit from so many was overwhelming – as we often say, that’s the #powerof657!”

 

Amandeep’s 425th virtual Muscle Dream was captured by photographer Guy Hinks. Over 100 beautiful photos will give viewers some additional insight into how the story unfolded – click here to view Amandeep’s dedicated online photo album on the charity’s standalone Flickr channel. Happy viewing!

RAF Benevolent Fund: The Royal Air Force Benevolent Fund is the RAF’s leading welfare charity. We exist to support current and former members of the RAF, their partners and dependants, whenever they need us. In 2020, we spent £26M supporting 63,700 members of the RAF Family. For more information visit: www.rafbf.org and Twitter.

The Prince & Princess of Wales Hospice aims to address issues and challenges on behalf of and alongside young adults living with life limiting conditions through four specific services, our Transition Clinic, Short Break Stays, our Living Well Service and our Art Service.

The Prince & Princess of Wales Hospice moved to its new home in Bellahouston Park at the end of 2018. The purpose-built state-of-the-art building has revolutionised the setting in which highly trained staff are able to care for patients. Our Young Adult Service is ground-breaking, and the hospice is leading the way in young adult transitional care not only for Glasgow but for the rest of Scotland.

Muscle Help Foundation (MHF) is a small charity delivering highly personalised, transformational interventions in the UK called Muscle Dreams for children and young adults (8-28yrs) with the muscle wasting condition, Muscular Dystrophy (MD). Uplifting, joyful and often cathartic in nature, MHF’s academically validated approach is rooted in the idea that well executed, shared experiences can be powerfully transformative in nature.

 

For more information, please contact:
Amelia Lupson
PR Executive, RAF Benevolent Fund
E: amelia.lupson@rafbf.org.uk
T: 07825 172447

Muscle-wasting conditions like muscular dystrophy may be more prevalent than previously thought

Muscle-wasting conditions, such as muscular dystrophy (MD), are individually rare, but together they touch the lives of significant numbers of people in the UK. Until recently, it was unclear just how many people were affected. 

However, new research funded by Muscular Dystrophy UK has shone a light on this subject and revealed that there may be far more people living with muscle-wasting conditions than previously thought.

Dr Iain Carey and his team at St George’s University in London reviewed millions of healthcare records from GPs across the UK and estimated that there were around 110,000 people affected by a muscle-wasting condition in 2019. That’s an extra 40,000 people compared with an earlier estimate of 70,000.

Muscle-wasting conditions such as muscular dystrophy (MD) can have a profound and lifelong impact on the health and quality of life of those affected and there is now an urgent need to ensure that sufficient healthcare resources are available to meet the complex needs of this growing population.

Rare diseases are often overlooked and underfunded, yet this study has revealed that muscle-wasting conditions collectively may actually be as common as better known conditions such as multiple sclerosis (MS) and Parkinson’s disease.

At a time when health and social care budgets are stretched tighter than ever, this study is vitally important to ensure that our community receives the resources it needs.

Of the conditions included in this study, muscular dystrophy was the third most common and it was estimated that there may now be almost 20,000 people affected in the UK. It may be officially classed as a rare disease, but muscular dystrophy certainly touches the lives of a lot of families. Click here to read more extensively about this comprehensive study.

The Muscle Help Foundation charity continues to play a vital role in supporting the muscular dystrophy community across the UK. We are currently running a national fundraising campaign with a simple mission – to raise £100k so that we can achieve our mission to deliver 657 transformational interventions for children and young people (8-28yrs) with muscular dystrophy.

CAN YOU HELP US COMPLETE OUR #POWEROF657 MISSION?

As of March 2022, 425 Muscle Dreams have been delivered, leaving a further 232 to go – the charity’s overarching goal is to deliver 657 Muscle Dreams, that’s one for every muscle in the human body.

Find out how you or your organisation can support our #powerof657 fundraising campaign by contacting mission HQ today.

Contact:

Steph Carter PhD CMPP
MHF Charity Volunteer Copywriter

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First of its kind ground-breaking research academically proves that Muscle Dream experiences deliver life-enhancing benefits for children and young adults with MD

Ground-breaking study proves that Muscle Dream wish fulfilment experiences deliver transformational, life-enhancing benefits for children and young adults with Muscular Dystrophy. The findings of this first of its kind research was carried out by clinical psychologists at the University of Hertfordshire. Underpinned by this pioneering research, the Muscle Help Foundation charity has launched a £100k fundraising appeal that sees its #PowerOf657 campaign refreshed in the hope that it can deliver many more Muscle Dreams, reaching the target figure of 657, one life-changing experience for every muscle in the human body.

 

Increased confidence (70%), self-esteem (76%), starting new interests/hobbies (66%), feeling empowered to achieve life goals (73%) and developing new skills (61%) are the key impacts wish fulfilment experiences can provide to children and young adults living with life limiting conditions such as Duchenne Muscular Dystrophy (DMD), a study by the University of Hertfordshire* on behalf the Muscle Help Foundation charity has found.

This is the only known research in existence to robustly investigate and validate the transformational impacts that highly personalised dream fulfilment experiences such as taking the controls of an aircraft and experiencing level flight, enjoying the thrill of a passenger ride in a high-performance racing car, learning a new skill, or meeting a sporting hero, can have on the lives of those living with conditions such as Muscular Dystrophy.

The study, which analysed data from 82 individual wish-fulfilment experiences delivered by the Muscle Help Foundation charity covering a six-year period, as well as wider qualitative data from 152 participants analysed to understand more specifically what it was about the experiences that was described as valuable or transformative, offers rich and detailed qualitative and quantitative analysis on the impact of the experiences both from the perspective of the young person and the wider family.

The study found that wish-fulfilment experiences:

Enhance quality-of-life

Allow recipients to realise their potential, develop new skills and grow confidence

Facilitate ongoing engagement and prevent isolation

Provide meaningful time away from the day-to-day challenges associated with living with a life-limiting condition

The research also highlights the need for ongoing efforts to create a society where disabled young people can have access to recreational activities and can live fully as citizens in their communities without disability being a barrier.

The research was the brainchild of Michael McGrath, CEO of the Muscle Help Foundation, one of the UK’s leading Muscular Dystrophy support charities. The charity, now in its 18th year, works tirelessly to help fulfil the cherished dreams and aspirations of children and young people, uniquely between the ages of 8yrs and 28yrs, with the muscle wasting condition, Muscular Dystrophy.

Michael, who lives with Muscular Dystrophy himself, is the driving force behind the charity, having undertaken two transformational, life-changing experiences that saw him make history as the first disabled person in the world to reach both the North (April 2002) and South Poles (January 2004).

“The whole ethos of the charity is rooted in the idea that well executed experiences that fulfil a young person’s dreams and aspirations, can be powerfully transformative to their lives; and I speak from experience when it comes to that.

Now that we have strong research that validates just how life enhancing such experiences are, it reinforces the need and urgency to deliver even more, so that the lives of more young people across the UK can be further enriched. Knowing that such interventions deliver hope, confidence, new skills and empowerment as well as joy, are immensely powerful impacts for children and young adults living with a disability.”

Michael McGrath
CEO, The Muscle Help Foundation

Dr Lizette Nolte, Principal Lecturer and Researcher on the Doctorate in Clinical Psychology Programme at the University of Hertfordshire who was part of the research team that completed the study, says:

“The research robustly demonstrates the positive and lasting impacts on ‘confidence’, ‘self-esteem’ and the ‘restoration of hope’ for beneficiaries and their families of these personalised experiences, as well as helping to counter experiences of social exclusion. Such experiences provide accessibility and participation to anyone with a disability, especially children, in a way that is often not possible in everyday life.

“Whilst the sample size analysed is relatively small, we have carried out in depth qualitative and quantitative assessment which has delivered robust findings. Since our analysis, the Muscle Help Foundation charity has now delivered a total of 423 wish fulfilment experiences – it is safe to say, based on the research findings, that the positive impacts and benefits of those Muscle Dream experiences will have been felt by all beneficiaries.”

Dr Lizette Nolte
Principal Lecturer & Researcher
Doctorate in Clinical Psychology Programme
University of Hertfordshire

Dr James Randall, Clinical Psychologist and Visiting Lecturer at the University of Hertfordshire who was also part of the academic research team adds:

“All of our research highlights the urgent need to develop and expand ways for young people with life-limiting conditions to be given more opportunity to live full and meaningful lives.

A society not structured to be accessible and enabling of children and young people living with disabilities can be very isolating for them as well as their families. Wish-fulfilment activities matter a great deal and the benefits have lasting positive impacts.”

Dr James Randall
Clinical Psychologist & Visiting Lecturer
University of Hertfordshire

Commenting on the findings of the study, Patron of the Muscle Help Foundation charity, TV presenter Lorraine Kelly, says:

“This research just proves how invaluable and life-changing wish fulfilment experiences like those delivered by the Muscle Help Foundation charity are in providing hope, empowerment, confidence and enabling children and young adults with life limiting conditions like Muscular Dystrophy, to truly realise their potential.

This level of life-enhancing enrichment is needed now more than ever, especially as the impacts of the pandemic have forced so many of these families into an almost permanent state of isolation.”

Lorraine Kelly
Patron, Muscle Help Foundation charity

As a consequence of COVID-19, the Muscle Help Foundation charity’s operational strategy had to change; the charity re-purposed from its face-to-face ‘Muscle Dreams’ experiences to delivering everything online. The charity created a suite of virtual music, art and laughter sessions, as well as an innovative ‘In Conversation With’ broadcast initiative with inspiring guests and personalities designed to engage the charity’s beneficiaries and families across the UK. The charity was supported by a BBC Children in Need funding award to help deliver more of these online experiences during the pandemic, which proved a lifeline to so many.

The charity is running a national campaign called ‘The Power of 657’ and their mission is simple; to deliver 657 transformational wish fulfilment experiences for children, young people and their families with Muscular Dystrophy in the UK – that’s one life-changing experience for every muscle in the human body.

For the charity’s beneficiaries, every ‘Muscle Dream’ experience is an opportunity to realise their potential. For their family and friends, each one opens up a support network of like-minded individuals. The charity will by the end of July delivered 423 ‘Muscle Dreams’ experiences with 234 to go to reach their overall target.

Michael says: “To deliver the remaining 235 experiences in a virtual way, which is the safest approach right now rather than delivering them in person, we need to raise £100,000 and we’re calling on the public to help us get to that target so we can enhance the lives of even more children living with Muscular Dystrophy. People can donate via the charity’s website here: https://www.musclehelp.com/powerof657

Lorraine Kelly adds: “The Muscle Help Foundation need the public’s support now more than ever so that they can continue to bring joy and enrichment to children and young adults living with Muscular Dystrophy. Please donate today.”

In the UK, some 70,000 babies, children and adults are impacted by Muscular Dystrophy. Muscular Dystrophy, a progressive condition that gets worse over time, is the single biggest genetic killer of children in the world today. It robs sufferers of their mobility, their independence and for those with the most severe type, predominantly children, their lives. There is no known treatment.

Michael McGrath adds: “The impact of the COVID-19 pandemic has been devastating for our beneficiaries who have faced additional social isolation, stress and financial pressures. Access to vital support and therapy services had to stop completely and we know first-hand from feedback we have received from families, that levels of anxiety and distress and deteriorating mental wellbeing have increased significantly, with many feeling even more vulnerable, distressed and exhausted.”

To donate to the charity’s fundraising appeal to deliver even more vital transformational wish fulfilment experiences for children, young people and their families with Muscular Dystrophy in the UK, head to: https://www.musclehelp.com/powerof657

BACKGROUND & KEY TIMELINES

The study was carried out by the University of Hertfordshire in partnership with the Muscle Help Foundation charity between 2015 and 2018 and assessed data from 82 routinely collected wish-fulfilment questionnaires delivered by the Muscle Help Foundation, as well as wider qualitative data from 152 participants, analysed to understand more specifically what it was about the Muscle Dreams that was described as valuable or transformative, covering a six-year period between 2010-2016.

Methodology: A mixed-method, cross-sectional retrospective design was followed. Descriptive statistical analyses were carried out on beneficiary feedback questionnaires. Thematic analysis was carried out on the qualitative data. Themes were extracted from this data which were then used to generate codes which were then aligned to key themes. The study offers rich and detailed analysis of data gathered over a six-year period, both from the perspective of the young person and the wider family.

Reacting to one of 50 photograph’s, MHF’s CEO pens heartfelt poem to support ‘Reflections in Colour’, MDUK’s major new online exhibition

The Muscle Help Foundation charity’s CEO Michael McGrath, who has limb girdle muscular dystrophy (LGMD2A), was invited to spearhead new online photographic exhibition ‘Reflections in Colour’ that saw 50 people with different muscle-wasting conditions share how an array of stunning pictures made them feel.

Michael’s reflection came in the form of a poem here, on one of the photographs called The Holly Hill Tree (pictured below) that caught his imagination, and which forms a part of the online exhibition.

Launched in May 2021, ‘Reflections in Colour’ is a series of photographs born of the friendship between businessman Andrew Robertson, who also has limb girdle muscular dystrophy (LGMD) and successful cinematographer Chris Howard, both from Kent.

Michael, from Hertfordshire, is the only disabled person to have reached both the North and South Poles. The North Pole expedition in April 2002 raised significant funds for Muscular Dystrophy Campaign (now MDUK), for which Michael was a Trustee at the time.

https://www.crispandsharp.co.uk/views/michael-mcgrath-reflects-on-the-holly-hill-tree/

His story of courage and determination was ‘life-changing’ for Andrew Robertson, who heard him talk soon after he himself had been diagnosed with LGMD. Andrew, 40, runs his own business and lives with his wife and eight-year-old son.

‘The Holly Hill Tree’ – a poem by Michael McGrath

Striking, purposeful and resilient.

And after all these years, still turning heads, still stirring imaginations, still drawing strength from mother earth.

Shaped by the elements, by the storms of life.

And yet still stable thanks to roots that nurture daily.

 

Much time has passed, years, many years.

And despite today’s challenging landscape, those roots are being fed like never before.

Holly Hill Tree, you are like many whose muscles are weary.

And yet, spirits are not dampened, we remain vigorous, we remain connected.

 

Despite the adversities of weather, we remain upright.

We see you Holly Hill Tree, despite appearances, we’re alive, we’re strong, we’re resolute.

You may look withered, you may look sad, you may look alone,

But we know there’s a beating heart that cares, that’s compassionate, that’s listening.

 

Whilst roots must often deal with rocks, with obstacles, with different adversities,

They more often than not break through the hardships before us, reaching upwards.

Like you Holly Hill Tree, we look to what’s possible today, to what we can control, not what we can’t.

We’re not locked down, we’re not helpless, we’re not alone.

 

And when the storm hit, we stood strong, we stood together, we looked up.

When we support each other, when our lives are intertwined, when we care, we will always be stronger together.

Oh Holly Hill Tree, we know its ok to not be ok, we know it’s ok to ask for help.

Look up, we see hope glinting through dark clouds, the suns warmth emerging.

 

Thank you Holly Hill Tree for being you, for reaching out, for casting your shadow.

We only know what we know, we only see what we see, we only feel what we feel.

You will always be striking, you will always be filled with purpose, stay hardy Holly Hill Tree.

We see your hope, your dignity, your humility, we see you Holly Hill Tree.

Andrew, who volunteers as a peer-to-peer supporter for Muscular Dystrophy UK, and his friend, Chris Howard, developed the exhibition together. Alongside each picture, Andrew recorded the thoughts of people with different muscle-wasting conditions from all over the UK.

 

“I heard Michael (pictured above right) at the first-ever MDUK event I attended. He described how he had refused to allow his disability to stop him becoming a successful business and family man and how he went on to conquer the poles.

“His words, all those years ago, have sustained me in my journey with muscular dystrophy and in my belief that life is what you make it.”

Andrew Robertson (pictured above left)

The exhibition, which features very high-quality prints, mounted on Foamex 3mm board and printed in Scotland, are available to buy here. A percentage of profits from the exhibition will be donated to the charity Muscular Dystrophy UK (MDUK).

“The idea for ‘Reflections in Colour’ was born after Chris and I shared a cup of tea after a walk around Kent Castle. Chris’ photograph named ‘Pot of Tree’ was a symbol of sharing and fun. We named the new fundraising campaign ‘Pot of Tree‘ so we could share the photographs and reflections with everyone. Every sale will result in a donation to MDUK.

Chris’ daughter also has muscular dystrophy, and after that first experience together, Chris and I would often meet for coffee.

I was blown away by his wonderful artwork, and what we originally planned as an actual show in a Whitstable art gallery has become a virtual exhibition.”

Source: Andrew Robertson

BUY A HIGH-QUALITY PRINT

Raising funds for MDUK

https://www.crispandsharp.co.uk/pot-of-tree-campaign/

BUY THE ‘REFLECTIONS IN COLOUR’ BOOK

Raising funds for MDUK

https://www.crispandsharp.co.uk/pot-of-tree-campaign/book/

BUY ‘THE HOLLY HILL TREE’ PRINT

Raising funds for MDUK

https://www.crispandsharp.co.uk/photo/the-holly-hill-tree/

READ THE FULL ‘REFLECTIONS IN COLOUR’ STORY

Found on Muscular Dystrophy UK’s website here

ABOUT MUSCULAR DYSTROPHY UK

Muscular Dystrophy UK is the charity for the 70,000 people living with muscle-wasting conditions in the UK. We bring together and support people affected by more than 60 rare and very rare progressive muscle-weakening and wasting conditions. We are facing the biggest threat in our 60 years with the loss of half our forecast fundraised income (£2.8m), just when our help is most critically needed by those that we serve.

ABOUT LIMB GIRDLE MUSCULAR DYSTROPHY

Limb girdle muscular dystrophy (LGMD) describes a large group of conditions, which mainly affect the shoulder and pelvic girdle muscles. The hip and thigh muscles also weaken and waste over time, causing increasing disability.

Symptoms and complications associated with the condition vary between the different types. In some people, the heart and breathing muscles are also affected, leading to life-threatening health problems. Limb girdle muscular dystrophy can be diagnosed at any age.

WATCH SPECIAL GUESTS ANDREW & CHRIS

ON MHF’S ‘IN CONVERSATION WITH’ BROADCAST

HOSTED BY MICHAEL McGRATH

BBC Children in Need Award helps charity increase engagement during pandemic to vulnerable, hard-to-reach families

The Muscle Help Foundation charity was delighted to receive confirmation of an Award following an application to BBC Children in Need’s COVID-19 Next Steps Programme (Additional Funding Phase).

A grant funded by the Department for Culture, Media and Sport (DCMS) in the amount of £34,909.00 was approved for resources to directly support the charity’s ongoing virtual Muscle Dream activities for children and young people with Muscular Dystrophy, isolated due to Covid-19. The grant also included a contribution towards evaluation and associated project delivery costs.

The aim of the project was to reduce isolation, improve connectivity and restore future hopes. The difference the charity made for children and young people can be summarised by the following three points:

  • Reduce isolation through online communication and engagement.
  • Staying connected with each other and the outside world.
  • Support good mental wellbeing and restore hope for the future
“There is something incredibly powerful that happened as a result of the Music 1.0 session; it has given our son hope, confidence and he has recognised what he is capable of. We know as his family just how talented and capable he is, and now he knows and believes it too which is just wonderful to see.” (Source: Mum of ‘B’, 9yrs)

 

All ‘Music 1.0’ Muscle Warrior participants received:

‘The Boy, The Mole, The Fox and The Horse’ by Charlie Mackesy
‘Eat Sleep Sing’ by Stacey DeLooze

In a mother’s own words, read a case-study illustrating the impact on the life of her 9yr-old son as a result of his participation in one of the charity’s bespoke virtual programmes.

TO READ ‘B’s CASE STUDY, CLICK <HERE>

 

Music 1.0 – Virtual Muscle Dream Programme

“He would like to do it again – it 100% lifted his spirits and all of ours, and all the extra bits are so appreciated and special.”

“Our son loved it – he loves singing so much!”

“He felt loved, appreciated, noticed, nurtured and part of the Muscle Warrior tribe. He is feeling so much more positive, and his confidence has definitely been uplifted.”

“These sessions really help with isolation, and they are fun, but they also bring skills, which are so important. So excited to see what MHF does next!”

“It was our son’s first ever time on Zoom. He was so nervous as has been shielding for the past year and has not been at school. It was a big deal doing it when he hasn’t been at school for so long.”

“Through the session he relaxed, and it built up his confidence. He saw the benefits of talking and being part of something unique. He is almost 16 and it is good for him to be out of his comfort zone and be put in these positions. As a mum, I enjoyed seeing his progression.”

All the goodies that have been received have been so amazing. All read the books and absolutely loved the Charlie Mackesy one. We are all talking about the books to everyone we know.

“At the end he was smiling – he was so proud of himself for doing it.”

“Our son really lacks confidence, but it was so lovely to see that he came out of his shell as he’s such a character – he loved the session so much.”

“He has read the books and has been practising with the singing one a lot. When the little box of sweets arrived his eyes lit up, he had such a grin.”

“The whole thing has really given him the boost that he needed and to be part of something. His mood has lifted, and he has been playing on his guitar and singing much more since the session – he loves music.”

Art 1.0 – Virtual Muscle Dream Programme

“We do not lose hope – these virtual Muscle Dreams really help us with that; the support from the charity and contact has been amazing.”

“It was a very different kind of experience – the whole family enjoyed it all. Siblings have entered the creative competition.”

We are noticing each time that our son is engaging more. He feels so isolated. These virtual sessions are really helping.”

“We are so looking forward to the families catch-up this weekend; it’s so important to do. We get ideas of how to help each other and know what each other are going through as we’re all shielding. I would love this to happen more regularly.”

“Really enjoyed the session – especially liked doing the input into the drawing and seeing the work happen live in real-time, right in front of you.”

“His grow-your-own garden kit arrived yesterday – he has his own little garden so that’s great, thank you so much.”

Laughter 2.0 – Virtual Muscle Dream Programme

“This was the first time a charity has arranged something like this, with all the families together having similar circumstances. In this time of pandemic, when everyone is under such huge pressure and stress, laughter yoga or laughter exercises was really needed. We learnt about the importance of laughter to relieve stress. To be very honest, we had forgotten about how to laugh during these many months of lockdown. It elevated our moods for some time. It gave us the feeling that someone is there for us and looking after us. I hope you will plan something like this again in the future.”

“Our favourite bit was talking to the other families.”

“The event really lifted our spirits. It was just what we needed.”

“We loved the treats (got pizza); always grateful for food. We got an extra pizza for the freezer, so it is the gift that keeps on giving!”

“We loved the book, plus the ‘Cuppa & Catch-Up’ was so good to catch up with the charity. The lovely afternoon tea topped it all off.”

“Looking forward to future activities – feeling so supported by the charity, plus watching the ‘In Conversation With’ broadcast on Facebook; they’re great!”

“We’re new to the charity; it was a great first experience. It lifted our spirits. We’re looking forward to seeing what else is coming up, now we are part of the Muscle Warriors!”

“I’ve always known that our Muscle Dream interventions make a positive, meaningful and lasting difference. Throughout the pandemic, we have witnessed how lives have changed, how our vulnerable communities have suffered and how our mental wellbeing has been impacted by the scourge of isolation. I’m so proud that the charity’s programmes ignited interests and brought families together at what for many continues to be a difficult time.

Thanks to BBC Children in Need, the charity has extended its ability to increase engagement to hard-to-reach families. Beneficiaries have become involved in an inclusive group where the restorative benefits of ‘hope’ prevail and where personal identities and that powerful sense-of-belonging are reinforced. We have been able to continue to focus on our vision in providing an increasing number of families with the support they so desperately need.

We have taken the time to listen, to hear our families and to then plan a variety of bespoke interventions rooted in music, art and laughter. The BBC Children in Need grant enabled us to recruit two key full-time contractor roles for what essentially was an eight-week timeframe – a Virtual Muscle Dream Maker and a Community Engagement Lead, worked closely in partnership.

These programmes engaged the specific needs of 82 vulnerable children, young people and their families. We maximized the impact of this funding to reduce social isolation, improve mental health and well-being and provide hope for the future to disadvantaged families. I believe we have enabled their voices, concerns and hopes to be heard and yet there is still so much to be done and so many other families who continue to face additional social isolation, stress and financial pressures – we know this is an incredibly damaging cocktail, which is why we desperately need more support.

In addition to the day-to-day challenges that living with a disability presents, the cause and effect of COVID-19 has become strikingly evident for our community of vulnerable young people and their families – if your organisation can help us deliver even more of this work, please reach out.

Michael McGrath

CEO, The Muscle Help Foundation

Charity celebrates NCVO’s National Volunteers Week on Zoom recognising awesome Muscle Warrior volunteers with WOW! Awards


National Volunteers’ Week takes place between 1st – 7th June 2021. It is an annual celebration of the incredible contributions made by millions of people across the UK through volunteering who selflessly give of themselves to help others.

Amongst a plethora of activities, the Muscle Help Foundation (MHF) charity’s army of Muscle Warrior Volunteers help to make Muscle Dreams a reality for its community.

From those that volunteer on ad hoc projects to those that give of their time to help bring on the magic to beneficiaries and families across the UK via its Muscle Dream interventions, volunteers are MHF’s life blood.

“It’s been said that ‘you make a living by what you get, but you make a life by what you give’. When a group of truly extraordinary people come together, much can be achieved. At 7.30pm on Wed 2 nd June 2021, the amazing people (pictured below) were spotlighted as part of NCVO's National Volunteers Week initiative, at a celebratory Zoom event in recognition of their outstanding support as volunteers for the Muscle Help Foundation charity.

Always needed and forever appreciated, it was an enormous privilege to personally pay tribute to some of the charity's army of selfless Muscle Warrior volunteers who give their precious time to help others who are not only vulnerable but who so desperately need and deserve a little magic and joy in their lives during these testing times.

All of these wonderful people (plus others that don’t appear in the below screengrab) continue to make such a difference. They bring their compassion, they give of themselves, they care. Put simply, they are priceless, and they mean the world to us.

Michael McGrath
CEO, The Muscle Help Foundation

MHF’s personalised Muscle Dream experiences moved online due to the pandemic. They are only made possible thanks to the huge support of volunteers. This year for National Volunteers' Week we wanted to share some volunteer stories to highlight the difference they make and the vital role that so many of them have played over the last 18 years!

We spoke to some dedicated volunteers to learn more about their volunteering journeys and have captured below the essence of what it is they kindly shared with us:

Sarah’s story:

’’I met 'Chief Muscle Warrior' Michael McGrath in 2009. We were judges for the 'WOW! Awards' which was ahead of its time for recognising front line workers. And Michael certainly 'wowed' me when he told me about the charity, its purpose and the beneficiaries it served.

Throughout the day he didn't mention his own condition. I was getting to know the man and the motivation. I didn't pay much attention to his wheelchair until he demonstrated its capabilities. I wasn't looking at the disability; I was absorbing joyful anecdotes, becoming energised and wanting to belong.

I wrote to Michael. Twelve years on, my volunteering roles have ranged from podcaster before it became trendy, beneficiary liaison, celebrity wing woman, and Awards application submitter. The one constant is that I became part of the MHF family which was what I had aspired to way back in 2009. It is a joyful enterprise and while the volunteering time I can devote ebbs and flows, the charity remains a constant and for that I am deeply grateful.’’

Sarah Lowther, ‘Muscle Warrior’ Volunteer

Milda’s story:

"I was a VIP Family host on MHF's flagship 2019 Porsche Muscle Dream programme in June 2019. What an unforgettably miraculous day it was, generously seasoned with joy, kindness, compassion, and empathy. For me, seeing the beneficiaries’ faces lit with surprise and awe was truly priceless.

Michael and Sue created a strong united community that came together as one big family. The warmth and emotion were beyond limits. I am truly honoured to have supported what was a magical and unforgettable day for all.’’

Milda Rowlinson (right), ‘Muscle Warrior’ Volunteer

Nick’s story:

"’I've been volunteering for MHF for several years now - mainly through my work at BCD M&E, but more recently in my own time as well. I have loved every minute! I've spent time working with Michael and the team, helping to put on some amazing experiences for all of the beneficiaries over the years.

I have most enjoyed filming and then editing the videos for the Porsche Muscle Dream event. You can see that the event is a big highlight for all of the beneficiaries in attendance on the day. It’s so fantastic to help put a smile on so many faces!’’

Nick Hamilton, (holding mic) ‘Muscle Warrior’ Volunteer

 

Chris’s story:

Chris began his volunteering journey 9 years ago. From hosting numerous Porsche Muscle Dream Programme experiences, to being a part of a Rare Disease Virtual Show team to taking on a cycling fundraising challenge.

’’To be a small part of an incredible charity and a wonderful team led by the incredible inspiration that is Michael McGrath, being a Muscle Warrior means so so much! We all come together with one aim, to give the ultimate experience and dreams to children who so truly deserve them most! What are we?!! Muscle Warriors!!"

Chris Holt, ‘Muscle Warrior’ Volunteer

 

 

Jess’s story:

Jess first heard of the charity back in 2013. He details his journey from being a father to his beneficiary son with Duchenne Muscular Dystrophy (DMD) to being a volunteer fundraiser:

’’I nominated my son Jack for a Muscle Dream at Twickenham to watch England v’s Ireland in the Six Nations. The weekend was superb from start to finish! Absolutely everything was considered, the pre-trip planning, the hotel, all the wonderful gifts, the 2-games of rugby, meals and so forth.

Jack and I thoroughly enjoyed ourselves. I came away thinking there was something very special about this small charity. That was the start of my involvement.

Gloucester Rugby Club Former players association have been extremely supportive in holding events and raising money for MHF. Sadly, last year’s charity walk was cancelled due to the pandemic. Hopefully, we will be able to hold an event in 2022. Although we desperately need cures and treatments, just as importantly these children and young adults and their families need these kinds of wonderful experiences along the way to make happy memories. Keep up the good work all. As always, we are Stronger Together!”

Jess Haggett, ‘Muscle Warrior’ Volunteer

 

 

 

Have you got the M-Factor?

Got what it takes to become a ‘Muscle Warrior’ Volunteer?

For further information, click HERE

Danny’s 10 Peak Snowdonia Challenge + 10 Muscle Warrior Salutes, >52k Steps Taken in 21 Degrees, 4 Blisters + >£1k Raised

Sunday 30th May 2021 saw long-standing Muscle Warrior volunteer and fundraiser Danny Pallett successfully complete Snowdonia’s 10 highest peak challenge trek, an incredible journey through the jaw-dropping landscape of North Wales. This was a demanding challenge and one that required good fitness, patience and hydration from start to finish.

“I can’t believe how much I lucked out with the weather, although at one point just after lunch it was almost too warm to get up the 4th mountain! 10 peaks, 10 Muscle Warrior salutes, 32km hiked, 2200m ascent, over 52k steps, 21 degrees heat, 4 blisters and some stunning views!

Sunday’s Snowdonia 10 peak challenge went really well, competing the hike in just over 12 hours and with such stunning weather – kicking off at 7am sharp, we spent the first 5/6hour completing the first 3 peaks which got me used to the terrain and inclines. As we came down from the 3rd peak, we had the steepest decline and that was tough on the knees but was going to be the worst of them all.

I drank the freshest water from a mountain spring, ate all my flapjack protein bars and was guided by the best (Dave Talbot) – the team, the hike, and the whole day was just incredible and even more incredible has been the support from everyone towards the charity and myself.”

Danny Pallett

As of Tuesday 1st June 2021, £1,031.42 has been raised from 45 donations via Danny’s dedicated Golden Giving fundraising page HERE in support of the Muscle Help Foundation charity.

Below a list of the Snowdonia peaks that Danny stood tall on:

Y Garn – 947m
Glyder Fawr – 1000m
Glyder Fach – 997m
Tryfan 917m – Optional
Pen yr Ole Wen – 978m
Carnedd Dafydd – 1044m
Carnedd Llewelyn – 1064m
Foel Grach – 976m
Carnedd Gwenllian – 926m
Foel-fras – 942m
Drum – 770m

“I am so incredibly proud of Danny! What a truly awesome effort. I know that he has been training really hard over the past year – what makes this all the more remarkable, is that we’re living through a pandemic that has disrupted some of the original challenge plans, meaning a switch to the Snowdon 10 Peaks Challenge which he succeeded in completing in just over 12hrs! WOW!

If ever you need an example of what commitment looks like by a fully-fledged Muscle Warrior, look no further than Danny. And if like me, you’re impressed by what he’s achieved, can I encourage you to please dig deep and make a donation – he’s not only smashed his original fundraising goal of £657.00 but he’s now got an amazing story to tell and some spectacular photos.

As fundraising challenges go, this is truly what going above and beyond looks like! On behalf of the charity, huge kudos and gratitude to Danny – as we say, that’s the #powerof657!

Michael McGrath

CEO, The Muscle Help Foundation

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