A special appeal from Catherine Woodhead, Chief Executive
I’d like to start this letter by thanking you for your support of Muscular Dystrophy UK and the many families and individuals living with muscle-wasting conditions, who rely on our services. I’m always so very grateful to be part of a charity that has so many dedicated and loyal supporters and, after the past 12 months, I can say with more certainty than ever that without people like you, MDUK simply wouldn’t exist.
As you may already know, we made the difficult decision last year to furlough 60 percent of our staff in order to sustain the charity’s services in the long term. During this time, kindness such as yours enabled us to keep delivering our much-needed advocacy, information and support services when people living with muscle-wasting conditions needed them more than ever.
As well as adapting the way we deliver our existing services during the pandemic, we developed new ones as well – like having regular Facebook live Question and Answer sessions, where MDUK Helpline staff were on hand to give one-to-one advice online about accessing benefits and other support. Specialist neuromuscular clinicians also provided information about coronavirus and muscle-wasting conditions – an incredibly valuable service for those isolating.
In 2020, we also saw many vital services come to a standstill; services, such as physiotherapy and hydrotherapy, which many people in our community rely upon. Without these services, many people (who were forced to stay home and shield) saw either their own mobility and physical health deteriorate, or else parents saw it in their children.
I’ve spoken to so many people who experienced this – one middle-aged man gradually lost the use of his leg muscles, forcing him to get used to life in a wheelchair a lot sooner than he had anticipated. And a young girl who noticed that every day her arm muscles grew less and less responsive – until she was unable to raise them to scratch her head.
In addition, many people needed our help while trying to navigate the benefits system. During the uncertain period with reduced staff capacity, our dedicated volunteers came forward and enabled us to continue offering our advocacy services. By carrying out essential support work, our volunteers enabled the advocacy team to focus on providing guidance to what were, in some cases, very in-depth applications and appeals.
While our services were in higher demand because of the pandemic, lockdown, and shielding requirements, these same factors also badly affected our fundraising activities. Like so many other charities, MDUK suffered a large funding gap, owing in part to factors such as large fundraising events being cancelled.
It was truly heart-warming to see so many in our community embrace this challenge and come up with new ideas to raise much-needed funds during lockdown. For example, when the London Marathon had to be cancelled, many people instead took part in ‘virtual marathons’ to try and fill the funding gap. (In fact, like so many others, I was so desperate to raise every single penny I could for MDUK that I did a virtual marathon myself – something I never would have dreamed I could do.)
Throughout what has been a difficult year for all, it has been both encouraging and humbling to see first-hand the unwavering attitude both of supporters like you, and of our staff and volunteers – going above and beyond to ensure we’re here, doing all we can to support the people who rely on us.
But despite these incredible efforts, we also had to make sacrifices. After much thought, we were saddened to make the difficult decision to cancel 2020’s research grant round and fund only the projects we were already committed to. Funding new and ground-breaking research is at the heart of Muscular Dystrophy UK’s work, and it gives us all hope that treatments and a cure are within reach. Every year, our goal is to invest as much as possible into muscle-wasting conditions, including rarer ones, and so this decision was upsetting for all.
That said, positive news in research did emerge from 2020 and, from the MDUK-funded projects already underway, there have been some exciting developments. For example, we have seen one team modify cells to identify new gene therapies that work better in the hearts of patients with Duchenne and Becker muscular dystrophies. And we’ve seen another team investigate the use of already-available commercial drugs in treating SMA with encouraging results, building on the breakthroughs we have already seen with therapies such as Spinraza.
But we need to keep these advances in research coming by funding as many new projects as possible and so, as well as thanking you for your ongoing support, I also need to ask for your help.
I am both delighted and thankful that this year’s research grant round will be going ahead, and this is only possible thanks to the kindness and generosity of supporters like you, the time and expertise given by volunteers and the sacrifices made by all.
And we now have to make up for lost time. The number of research projects we can fund depends entirely on how much income we can raise.
Your kind support has already enabled us to do so much in such difficult times. If you feel able to set up a regular gift, or to make a donation to start the year, anything you can give will greatly increase our ability to fund research in 2021.
If research is going to progress, we just can’t afford to tread water for another year. With every missed opportunity, faster and more specific diagnoses become less likely. We need to keep funding and supporting new world-class research to drive the development of effective treatments and cures. We remain determined: we won’t stop until we have found them for all muscle-wasting conditions.
While the development and roll-out of COVID-19 vaccines means there is now light at the end of what’s been a very difficult year for everyone, there is still a great deal of uncertainty for people living with muscle-wasting conditions, many of whom have had to shield for extended periods when classified as clinically extremely vulnerable. Our care, advocacy and information services are needed now more than ever. So once again, on behalf of everyone we support, thank you, and I hope that 2021 is a brighter year for all of us. Your generosity makes our work and our research possible.
CEO, Muscular Dystrophy UK
PS: Your support could help us get research back on track in 2021. We can’t let a lack of funds force us to turn down a promising piece of research. Thank you for your generosity today.
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SMA gene treatment Zolgensma accepted for restricted use
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