The Yellow Front Door, The Beach Hut & Those Patch Houseplants!

Guest Blog ~ source reproduced from RARE Revolution [16.09.20]

"September was Muscular Dystrophy Awareness month so what better excuse to catch up with RARE Rev friend and first ever RARE inspiration Michael McGrath. 

Michael is the Founder & CEO of the Muscle Help Foundation (MHF) charity ~ in this guest blog, he shares with us what he has been up to since March 2020. From shielding to shower curtains and how the charity adapted during COVID-19 to ensure it could continue supporting its extremely vulnerable community by delivering a suite of virtual interventions for children, young people and their families across the UK with 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. Be under no illusion that the road ahead is a straightforward one!"

Back in March 2020, 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 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, 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, specifically young people with muscular dystrophy and their families across the UK (like Christian below).

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 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 MHF'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 above expression should actually read ‘out of sight, never out of mind’.

There have been several very useful COVID-19 info updates from some of our friends including Action Duchenne, Duchenne UK, Duchenne Family Support Group (DFSG), DMD Pathfinders (now Pathfinders Neuromuscular Alliance) and Muscular Dystrophy UK – that said, the voices of our community are in my opinion still not being heard.

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 moving closer to our goal of realising 657 Muscle Dreams, one for every muscle in the human body.

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.

The launch of MHF’s bi-weekly 'In Conversation With' online broadcast series offers another community engagement platform – since May, different guests and personalities have been invited to share their stories and insights on a variety of relevant topics that not only speak to our community but also entertain, uplift and inspire.

Pictured above, Harriet Brady-Jackson’s ‘Living Life with Laughter’ takes place on Friday 30th October 2020 at 4pm – streamed ‘live’ on MHF’s Facebook & YouTube channels, the conversation is also recorded allowing anyone to watch it at their convenience.

"The purpose of these conversations is to help our families feel less isolated

and more engaged"

Previous episodes have included ~ isolation tips by former nuclear submarine commander Ryan Ramsey, to conversations about resilience as a family with leading learning and development consultant Sue Duraikan, psychology tips for MHF's powerchair football community with Chartered Sport & Exercise Psychologist & PhD Student at Loughborough University Erin Prior, insights from The Grand Tour from Executive Producer Andy Wilman (interviewed by Jake Kanter, International Editor at Deadline Hollywood and my son-in-law), top tips in overcoming adversity and all things football from the Jack Rutter and most recently a conversation with long-time supporter, charity friend and Chief Driving Instructor at the Porsche Experience Centre at Silverstone, Gordon (aka Gordy) Robertson.

We reached out to some of our incredible volunteers around the country. We invited them to create snappy video messages that uplift, burst with positivity, messages that inspire but also amplify the charity’s STRONGER TOGETHER ethos, more important now than ever before. Click here to watch some of these short .60secs films ~ several selfless Muscle Warrior volunteers rallied including Financial Broadcaster, Fearsome Podcaster & Radio & TV Presenter Sarah Lowther (pictured below) ~ happy viewing! 

We hear that during lockdown, a number of home improvements were deployed to help bring some shielding serenity into his (Michael's) 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 depicts colourful beach scenes ~ this space is now called ‘the beach hut’!

In addition, a sanctuary of calm has been created thanks to the procurement of 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!"

Article Credit (16.09.20): RARE Revolution Editor, Nicola Miller & Rebecca Stewart