September is Muscular Dystrophy Awareness month so what better excuse to catch up with RARE Rev friend and first ever RARE inspiration Michael McGrath.
Michael is Founder & CEO of The Muscle Help Foundation and in his guest blog he shares with us what he has been up too over the past few months. From shielding to shower curtains and how The Muscle Help Foundation has been adapting during COVID-19 to ensure they are still supporting their community and delivering Virtual Muscle Dreams to young people affected by Duchenne Muscular Dystrophy.
My week-to-view diary (I use electronic versions too!) has a small numerical annotation in black ink against Wednesday 9th September – the three numbers ‘181’ tell me how long I’ve been shielding – yes, I’m counting!
The past seven months have been relentless, not least for many small UK charities. The varying impacts of COVID-19 and the continued disruptive nature of the pandemic have meant that those who work assiduously have had no choice but to adapt. And now as coronavirus cases escalate, social gatherings of more than six people are illegal – I can’t remember the last time I was in the company of six people – it just doesn’t get any easier!
Charities that are agile, who embrace change and seek to innovate will prevail. But be under no illusion that the road ahead is a straightforward one!
Back in March 2020, the Muscle Help Foundation (MHF) charity took the enormously difficult decision to cease its planned Muscle Dream operations. For those that don’t know, just over 96% of MHF’s beneficiaries are young people and young adults with Duchenne Muscular Dystrophy (DMD) – in terms of the charity’s age spread, services are aimed at the 8-28 group. Over the past 17 years, we have learnt a great deal about the journey of DMD and its impact on families. It was a hard decision but clearly the right one.
Classified as a rare disease, DMD predominantly affects boys. A genetic disease, it causes muscle weakness and muscle wasting. Until recently, DMD children did not often live beyond their teens. Today, improvements in cardiac care and respiratory technologies mean that life expectancy has increased. Many people with DMD now reach their 30s. In the last 18 months, the MHF has lost 5 DMD beneficiaries (not due to COVID-19), average age 17yrs.
Seven months on, we remain resolute and determined to continue our vital work. As a small charity with one full-time head, a few contractors and a handful of amazing volunteers, we had no choice but to be agile – for some, being agile is just a mindset or way of thinking but for me, it’s about the ability to ‘consciously’ shift one’s thoughts when and how the situation requires it. COVID-19 was the catalyst that forced that shift in thinking!
MHF pivoted quickly and re-purposed – our COVID-19 strategy was formed and, like the crosshairs of a rifle, our focus shifted towards a multi-pronged virtual delivery model with one goal in mind – to support our vulnerable community: young people with muscular dystrophy and their families across the UK.
Since COVID-19 began, we’ve checked-in with many of our families – we’ve asked them how they are coping and how the charity can support them moving forwards. Here we are in September – many I know are still feeling very anxious. Many are feeling increasingly isolated and alone. Many, like me, are hardened shielders.
Out of sight, never out of mind
RARE readers will perhaps be familiar with the expression ‘out of sight, out of mind.’ One of our long-standing volunteers is about to embark on a standalone project to help raise awareness of families within our community still shielding. He’s planning on creating a set of short films designed to support the charity’s efforts in educating, engaging and energising the general public. The films will offer a powerful reminder to everyone that it’s OK to ask for help - perhaps the aforementioned expression should actually read ‘out of sight, never out of mind’.
There have been several really useful COVID-19 information updates from some of our charity friends including Action Duchenne, Duchenne UK, Duchenne Family Support Group (DFSG), DMD Pathfinders (now called Pathfinders Neuromuscular Alliance) and Muscular Dystrophy UK – that said, the voices of our community are in my opinion still not being heard.
Muscle dreams to your door!
MHF is now bringing the experiential magic of ‘lockdown’ Muscle Dream interventions directly into people’s homes – it’s certainly a different way of doing things but evaluations evidence the significant joy and hope for beneficiaries and their families. We are edging closer to our goal of realising 657 Muscle Dreams, one for every muscle in the human body.
Pictured below: Watch Christian’s reaction HERE to Keith Lemon’s message as part of his virtual Muscle Dream experience. Afterwards, the charity received the following feedback: “To say [the Muscle Dream experience] raised spirits is an understatement!!”
A virtual reality
MHF recognises the importance of digital – in communicating with stakeholders, we are working hard by, for example, leveraging our social channels more effectively. COVID-19 has amplified our need to identify and recruit our first Digital Marketing Trustee, a key Board appointment, and an exciting opportunity for someone who can bring a senior business perspective, provide thoughtful leadership and input on the role of digital and help build and implement the charity’s future digital vision.
A suite of virtual social events designed for our tribe of Muscle Warriors made up of past beneficiaries, families, volunteers and charity friends including our monthly ‘BIG 657 Quiz Night’ are helping to keep our community connected.
From isolation tips by a nuclear submarine commander, to alleviating stress and anxiety, in addition to conversations about resilience as a family, psychology tips for our powerchair football community and the power of laughter yoga by a certified happiness facilitator, the intention is to help our families feel less isolated and more engaged.
MHF continues to work hard to bring its community together during these
We hear that during lockdown, a number of home improvements were deployed to help bring some shielding serenity into his world. To project outward sunshine, my wife arranged for our ‘front door’ to be painted a joyful yellow. The new shower curtain in my wet room depicting seashells is called ‘the beach hut’. And a sanctuary of calm has been created thanks to various houseplants, each with their own wonderful names! And yes, you may have heard on the proverbial grapevine that my favourite is the Monstera Adansonii, otherwise known as the monkey plant, the mini swiss cheese plant or its actual Patch plant name… Wallace!
Who are The Muscle Help Foundation?
The Muscle Help Foundation (MHF) is a small family-centred national charity delivering transformational interventions in the UK called Muscle Dreams for children and young people (8-28yrs) with Muscular Dystrophy (MD). Michael is the charity’s CEO and is affectionately known as the ‘Chief Muscle Warrior’.
You can read Michael's RARE Inspiration feature in the first ever RARE Revolution Edition HERE (September 2016).
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Rare Revolution Editor