First of its kind corporate partnership between MHF charity and Ares Management Corporation announced

The Muscle Help Foundation (MHF) charity is delighted to announce an exciting corporate partnership with Ares Management Corporation, and it’s a first for a UK charity!

Ares Management Corporation is an American global alternative investment manager operating in the credit, private equity and real estate markets. Ares has provided funding to the charity to support its vital work in delivering transformational wish-fulfilment interventions to children and young adults living with Muscular Dystrophy.

Ares-MHF

The company supports charitable causes that work hard to address systemic challenges through transformative giving intended to improve individuals’ quality of life. This charitable work is made possible through the generosity of individuals and Ares Management Corporation, which donates a portion of profits from select funds to its own Foundation to align the firm’s investment activities with its societal impact.

MHF’s CEO and founder Michael McGrath said:

On behalf of the Muscle Help Foundation we are delighted to have been selected as the first charity in the UK to partner with Ares Management Corporation. Through this very special collaboration, Ares has supported us with a generous donation of $25,000 as well as directly supporting MHF’s ongoing work, specifically in contributing towards the charity’s mission of delivering 657 Muscle Dream interventions in the UK for children and young people with Muscular Dystrophy.

It’s my hope that MHF will deliver its purpose at what is an uncertain and challenging time for many, not least our vulnerable community. I am looking forward to not only working closely with Ares in amplifying the mission, but also seeing the positive and potentially game-changing impact that can come from corporate relationships where there is an alignment of values and where common goals exist to do good. As we say, that’s the #powerof657!

Muscle Dreams are once in a lifetime interventions, moments-in-time or experiences delivered in the UK for children and young people (8-28yrs) living with Muscular Dystrophy. Over the years, experiences have included beneficiaries taking the controls of an aircraft and experiencing the freedom of level flight, enjoying the thrill of a passenger ride in a high-performance racing car like a Porsche 911 Turbo S, learning a new skill to interviewing a movie icon or meeting a sporting hero – click here to see some of the charity’s videos on our YouTube channel. The number 657 is significant because it represents one life-changing experience or a moment in time, be it in-person or virtual, for every muscle in the human body and the charity is determined to deliver on this 657 mission.

It has never been more important for the MHF charity to deliver its work and activities at what is an uncertain and challenging time for many – the ongoing impact as a direct result of the cost of living crisis is yet another adversity that MHF’s vulnerable community must face.

LET’S HAVE A CONVERSATION:

If you or your organisation is interested in talking to us about corporate partnerships or have any recommendations of organisations looking to make a difference for a worthy cause, please either get in touch here or email < ceo(@)musclehelp(dot)com > and let’s have a conversation.

ABOUT THE MUSCLE HELP FOUNDATION (MHF) CHARITY:

MHF organises and facilitates highly personalised events, experiences, and activities, which they refer to as Muscle Dreams, for children and young people with Muscular Dystrophy or related muscle-wasting conditions and their families.

The charity’s vulnerable community remain at the forefront of its work – the impact of the global pandemic was significant, not least on their mental wellbeing. Now with the escalating costs of food and energy, our beneficiaries and their families are having to dig even deeper in finding ways to keep warm, nourished and well. Now more than ever, MHF’s work is needed – this is evidenced by the increasing number of nominations but also requests from outside the UK for help and support.

ABOUT MHF’S VULNERABLE BENEFICIARIES:

Duchenne Muscular Dystrophy (DMD) is the most severe form of Muscular Dystrophy (MD) – it is life-limiting affecting approximately 1 in 3,500 new-born boys. The vast majority (some 96%) of MHF’s beneficiaries are boys and young adults with DMD. On average, those aged 10-13yrs will transition into a manual wheelchair. By the time they reach 17-19yrs, breathing, cardio and diminishing arm movements are increasingly prevalent.

ABOUT MUSCULAR DYSTROPHY (MD):

Thanks to MHF’s friends at Muscular Dystrophy UK, new research reveals that approximately 110,000 people (babies, children and adults) in the UK live with muscle-wasting conditions. Muscular Dystrophy is a progressive condition that gets worse over time. It is the single biggest genetic killer of children in the world today. It robs sufferers of their mobility, their independence and finally for those with the most severe type (Duchenne Muscular Dystrophy or DMD), their lives. Although there is some excellent research going on around the world, there is still currently no known treatment.

ABOUT MHF’S UNIQUE POINTS OF DIFFERENCE:

Over the past 12-months, MHF’s tailored approach in operationalising bespoke virtual ‘person-centred’ Muscle Dream programmes continued to deliver positive outcomes for beneficiaries and families. The ‘lived experience’ of the charity’s CEO (Michael McGrath) who has Muscular Dystrophy (LGMD2A) and who is the driving force of the organisations work, provides both a unique, valuable and trusting influence on those for whom MHF exists to serve.

THINK 657 – THE MORE UNUSUAL, THE BETTER!

MHF is running a national campaign called The Power of 657 and its mission is simple – to deliver 657 transformational interventions 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. We would like you to think about the number 657 – the charity is on the lookout for links to the number 657 and as such, we are keen to establish mutually beneficial collaborations ideally around 657. So, get in touch if you know of any connections in your world or in your work, the more unusual, the better!

For the charity’s beneficiaries, every Muscle Dream experience is an opportunity to not only realise their potential but also become a Muscle Warrior and by default, join the charity’s tribal community. For their family and friends, each one opens up a support network of like-minded individuals.

By mid-Feb 2023, it is anticipated that the charity will have fulfilled 462 Muscle Dreams, leaving 195 to go in reaching the overall target of 657.

ABOUT THE CHARITY’S IMPACT:

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.

ABOUT 2023 – THE 20th ANNIVERSARY YEAR – PLEASE DONATE £20.00 

2023 sees the charity reach a milestone, its 20th Anniversary – since 2003, it has touched the lives of 1000’s of people across the UK living with Muscular Dystrophy, from families and local communities to schools and businesses; today, its impact and reach continues to grow.

To push on with its 657 mission, the charity is not only looking to establish new partnerships and collaborations but like many small charities, it desperately needs support in order to continue its important work – if you can help, please donate £20.00 or whatever you can give by clicking HERE – thank you.

10th Anniversary Porsche Programme Sees 10 Muscular Dystrophy Petrol-Heads Rock Silverstone With A Once-In-A-Lifetime Driving Experience

Last month (Sept 2022), the Muscle Help Foundation (MHF) charity gave ten lucky beneficiaries the experience of a lifetime at a unique Porsche driving experience event at Silverstone, the home of British motorsport. After three long and challenging years due to the pandemic, the charity’s signature Porsche Muscle Dreams Driving Experience Programme finally returned to mark the 10th Anniversary of its flagship event.

Ten beneficiaries living with Muscular Dystrophy (MD) took to the tracks in a Porsche 9-11 at Silverstone to experience the thrill of a ride around the iconic Grand Prix Circuit as well as Porsche’s own racetrack of nearly 5km including their handling circuit, the straights, the kick plate and the ice hill.

MHF’s CEO Michael McGrath said:

“Seeing the happiness on everyone’s faces as they zoomed around the track was just priceless. It’s why we do what we do. For every beneficiary and their family this is about empowerment, increasing confidence, bringing vulnerable families together and ultimately creating cherished memories that last a lifetime.

“I know that so many families are desperately worried about the increasing costs of living, the energy crisis and their ability to pay bills as well as ongoing inflationary pressures, meaning there’s even more uncertainty in addition to the ongoing impacts of the COVID-19 pandemic – I’m really concerned that many of our already very vulnerable families will face additional social isolation, more stress, more financial pressures, not least diminishing mental health and emotional wellbeing, more so now than ever before. Being able to offer some temporary respite from those day-to-day worries through our transformational work and moments-in-time like the charity’s unique Porsche programme, has never been more important”

 

Porsche Programme

What some of this year’s Class of 2022 beneficiaries and their families said:

Toni Charlick from Gravesend, Kent, mother to Adam (17yrs, pictured below) who took part in the programme, said:

“Adam has always loved cars; it is his biggest passion, so to have this opportunity was amazing! Families living with MD must miss out on so many things because of accessibility etc so the work of the Muscle Help Foundation charity is incredibly important to us and all families living with MD. The event was fantastic. Adam was smiling from ear to ear the whole day. He is keen to pursue a career in car engineering and design and this has inspired him to further pursue that dream. This experience has had a hugely positive impact upon his mental health and how he views life”

Adam (pictured below) said:

“My ultimate dream is to work with cars and I’m currently studying for my BTEC engineering at sixth form so I can achieve this. I just love being in or around cars, especially fast ones. I am determined not to let Duchenne Muscular Dystrophy stop me achieving my dreams”

 

Muscle Help porsche programme

Another family that took part in the programme are from Ukraine. They are currently living in the UK with a sponsor family after fleeing the country due to the war.

Marharyta Yashchenko, mother to Danyil (15yrs, pictured below) with Duchenne Muscular Dystrophy (DMD), said:

“It’s been a difficult time for us having relocated here this year due to the war so when we got this opportunity, we were so excited and emotional. My son is very fond of cars, as are many boys. Being in a fast car allowed him to realise his dreams.

“Very often, people with disabilities are embarrassed about their condition and lead a secluded lifestyle. This usually leads to disease progression and physical deterioration. Such support like this, from charities like The Muscle Help Foundation, provide an opportunity for people with Duchenne to be themselves, to be in society, to get new acquaintances, expand their horizons, and get new experiences. In Danyil’s words he said, ‘the Porsche is a machine for the soul’!

The event was supported by the charity’s key partners, namely the Porsche Experience Centre at Silverstone and Whittlebury Park, near Towcester. The first Porsche Muscle Dreams Programme took place in May 2011.

A mini army of incredibly devoted MHF Volunteer Hosts (pictured below) from all walks of life have over the years selflessly given up their time to ensure that beneficiaries and their families have the most magical experience of their lives.

Muscle Help Team Photo

Jake Hudson (28yrs, pictured below) from Crewe, Cheshire, also with Duchenne Muscular Dystrophy (DMD) said:

“This opportunity was really special to me and my family as we have always loved cars. To actually be in a Porsche is something of a dream, one that I never thought was possible. Having access to wish-fulfilment experiences like this is very important in my opinion – it can be difficult to accept MD and it can be all too easy to believe an active life is not possible, but that’s not the case. This experience has definitely enhanced my self-belief, confidence, and my can-do attitude.

“Overall, it was just awesome. The adrenaline was pumping and as we went faster, my smile got bigger. It was emotional too though – knowing this is a once in a lifetime moment which I will cherish forever! My disability was left at the front door. The whole experience empowers you to just be yourself”

 

Vanessa Hagg from Norfolk, Mum to Will (13yrs, pictured below) said:

“Will wants to go again; it has ignited his passion for cars even further and he’s determined he will drive his own car one day. He’s also asked if I can buy a convertible car so I can take him for drives along the coast – it will not be a Porsche though!”

 

 

Gill Kerr, Manager, Porsche Experience Centre Silverstone said:

“Sharing the excitement of Porsche is core to what we do at the Porsche Experience Centre Silverstone. But sharing that excitement with the Muscle Warriors and their families is particularly special. 2022 marked the 10th anniversary of Porsche’s partnership with Muscle Dreams and we’re delighted to have helped realise the dreams of the very deserving beneficiaries over those 10 years in support of this transformational charity”

 

Charles Sargeant, Managing Director, Whittlebury Park said:

“The Muscle Help Foundation charity is a fantastic cause, and we were delighted to welcome the Muscle Warriors back to Whittlebury Park to help fulfil some of their wishes. Being a car enthusiast myself, nothing makes me happier than seeing the enjoyment we are able to give to others by sharing our passion”

David Munson, General Manager, Whittlebury Park added:

“It was amazing for us to welcome back the Muscle Help Foundation for their 10th Anniversary of the Porsche programme at Whittlebury Park this year. Having seen what the charity has accomplished in the last decade and making the dreams of so many young people a reality, it really is a delight and privilege to continue to be a partner for such an amazing charity and for such a fantastic event.

Seeing the smiles on the faces of the 10 Muscle Warrior beneficiaries as they returned from Silverstone this year was truly wonderful – I’m sure we’ll see many more in the future. We look forward to being part of the journey in helping the charity achieve its 657 mission”

 

How you can support our small charity:

The Muscle Help Foundation (MHF) organises and facilitates highly personalised events, experiences, and activities, which they refer to as Muscle Dreams, for young people with Muscular Dystrophy or related muscle-wasting conditions and their families.

Thanks to Muscular Dystrophy UK, new research reveals that approximately 110,000 people (babies, children and adults) in the UK live with muscle-wasting conditions. Muscular Dystrophy is a progressive condition that gets worse over time. It is the single biggest genetic killer of children in the world today. It robs sufferers of their mobility, their independence and finally for those with the most severe type (Duchenne Muscular Dystrophy or DMD), their lives. Although there is some excellent research going on around the world, there is still currently no known treatment.

The Power of 657:

The MHF charity is running a national campaign called The Power of 657 and its 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 not only realise their potential but also become a Muscle Warrior and by default, join the charity’s tribal community. For their family and friends, each one opens up a support network of like-minded individuals.

To date, the charity has delivered 436 Muscle Dream interventions with 221 to go to reach the overall target of 657.

Uplifting, joyful and often cathartic in nature:

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 work and impact is rooted in the idea that well executed, shared experiences can be powerfully transformative in nature.

2023 is MHF’s 20th Anniversary:

Next year, 2023 will see the charity reach its 20th anniversary – since 2003, it has touched the lives of 1000’s of people across the UK living with Muscular Dystrophy, from families and local communities to schools and businesses – its impact and reach continues to grow.

For MHF to continue its vital work and push on with its 657 mission, the charity desperately needs support – if you can, please donate by clicking HERE – thank you.

“Welcome to your Club!” Lifelong Tottenham Hotspur Fan Azeem’s Awesome Muscle Dream with Spurs First Team Squad

Some might say that nearly 4 years is a long time from receipt of a Muscle Dream nomination to fulfilment but that’s pretty much exactly how long it took (give or take 3 months) to deliver what was the Muscle Help Foundation (MHF) charity’s 436 Muscle Dream for 22yr-old Azeem from Leyton, East London and what a memorable experience it was!

The human spirit is a wonderful thing and whilst the journey is sometimes filled with family hardships, real life circumstances that derail even the best laid plans and adversities that come from a global pandemic, MHF together with support from the Lord-Lieutenant of Hertfordshire finally delivered on the promise – patience is indeed a virtue!

 

“These moments are priceless – the look on my beautiful son’s face was wonderful for me, his father, to see. The day was one of the best days of my life seeing my son Azeem filled with pure joy and happiness” (Source: Imran Ali, Azeem’s father)

 

tottenham-training-ground Azeem

 

Nov 2018 – Azeem’s original nomination was received by the charity from his mum Shazia in Nov 2018 and as MHF discovered, pandemic aside, special VIP visits such as this are extremely rare. Azeem has an extremely rare X-linked genetic progressive variant of Muscular Dystrophy known as Pelizaeus-Merzbacher disease (PMD), a degenerative central nervous system disorder in which coordination, motor abilities, and intellectual function deteriorate.

Sept 2019 – nearly a year later, a date in Sept 2019 was suggested but it soon became apparent that Azeem’s sister, who has severe scoliosis, was scheduled to have spinal fusion surgery on the visit date in question.

Dec 2020 – wind the clock forwards to Dec 2020 and unfortunately due to the pandemic, nobody knew how long it would be before such events could recommence. That said, hats off, absolute respect and gratefulness to Spurs who sent a small gift to Azeem for Christmas to let him know that his beloved club was thinking of him.

Aug 2022 “Welcome Azeem to your club” the warm and friendly words spoken on Tues 9th Aug 2022 by the Spurs security gatehouse staff at the club’s Training Ground in Enfield (Hertfordshire) on what was a hot summer’s afternoon, to the excited Muscle Dream beneficiary Azeem and his equally excited father Imran – Azeem spent the afternoon with his father watching the First Team train and then meeting all the players afterwards – the rest as they say is history.

 

Imran Ali (Azeem’s father) said of his son’s experience:

“I would like to give a massive thank you for this amazing experience for my dear son, Azeem who is a very special kid now growing into adulthood. Azeem is a very happy and bright boy who has a very complex muscle dystrophy condition which prevents him from physically being able.

Azeem has been a lifelong Spurs fan alongside me – we have been going for many years and are season ticket holders which makes my son extremely happy especially when we see those winning smiles. His happiness is very precious to us as a family”

 

Azeem Azeem

 

Imran Ali (Azeem’s father) goes on to say:

“The news of being able to see the players train and meet and greet them was a very emotional moment that I will never forget for the rest of my life.

Having seen Azeem’s face whilst the news of going to see the players was incredible – his positive happiness is very infectious, and it brings lots joy to our family. Big thank you to the Muscle Help Foundation and to dear Michael (and those others) for arranging this for my son.

A Day of Emotions – we kept this experience a surprise for Azeem which made it even more amazing for us on the day. We were greeted with a welcome from the security man who said “Welcome Azeem to your club”! I reflected afterwards that getting this personal greeting was so touching for me. We started the day by taking Azeem in and meeting the club’s admin team and knowing the agenda for the day. We visited the press rooms where we took pics. Azeem was asked whom his favorite player was – he mentioned Heung-Min Son & Harry Kane. The day went along with snacks and drinks which Azeem enjoyed, with much chocolate which he adores”

 

Imran Ali (Azeem’s father) concludes:

“We were then taken to see the facilities in the Tottenham Hotspur Training Centre and watch the training – the players came to see my son! Azeem’s astonishment when Heung-Min Son came to greet us and even quoted Azeem’s name saying “Hello Azeem, it’s great to meet you. How has your day been?” After spending some time with us, he signed autographs, took time with photos and then along came Harry Kane. Then rest of the squad followed suit which made Azeem very very happy.

These moments are priceless – the look on my beautiful son’s face was wonderful for me, his father, to see. The players were all very good – they took extra time whilst having their photos taken and chatted with us. Thank you to all the Tottenham squad for making us feel like VIP special guests.

The day was one of the best days of my life, seeing my son Azeem filled with pure joy and happiness. He has been very smiley after this event. From the bottom of our hearts, amazing. The charity has been brilliant to make this day happen. Thank you”.

 

When Azeem finally returned home, he found out that over the next few days, the family would be coming together over some Manjaros cuisine, Azeem’s favourite takeaway, to enjoy a fusion feast of African and Caribbean dishes, courtesy of the charity.

MHF has long understood the value of fostering a sense of belonging among the vulnerable beneficiaries and families that we are so privileged to work with. All are welcomed into the charity’s Muscle Warrior tribe, where there is a sense of community and shared understanding awaits. As we say, that’s the #powerof657.

 

About the Muscle Help Foundation (MHF) charity

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 work and impact is rooted in the idea that well executed, shared experiences can be powerfully transformative in nature.

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

Freelance Medical Writer
Lyrical Medical Writing Services
www.lyricalmedical.com

Follow Lyrical Medical Writing Services on Twitter
https://twitter.com/LyricalMedical

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

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