Today I’m delighted to publish our 2022/2023 Impact Report. A year in which we rallied our community so that everyone with a muscle wasting and weakening condition can get the healthcare, support and treatments needed to feel stronger, both mentally and physically.
The Covid-19 pandemic required fast paced, difficult decisions which continued into 2022/23. These hard decisions, a clear focus and the amazing support of our community have allowed us to successfully return to a full grants round for new research projects this year, which brought our number of research grants to 43 projects and our research commitments to £6million.
This support also helped us to deliver more assistance to our community, with an increased demand coming through our helpline phone and email service - greater than during the initial Covid-19 period. The main area for which people come to us continues to be access to welfare and financial support, particularly in navigating the PIP system.
We provide information, advice, and advocacy support in this area and in the year ahead we will be increasing our policy capacity around this and other topics to tackle decision-makers about issues that our community experience. The investment to do this will come from our unrestricted reserves, which we have built up through careful planning and the excellent delivery of activities like the Microscope Ball, along with all the collections at shops and stations, cakes sales, marathon to three-kilometre runs, people skydiving and numerous other community fundraising activities. There are also those kind enough to leave a gift in their Will, who will be able to see an ongoing legacy supporting our community both today and tomorrow.
Other planned investments for 2023/24 include an increase in research commitments which will see us make up for the grants round lost in 2020 due to the pandemic; more effective communications, so we can reach a greater number of the 110,000 people who need our support; and a continued drive to collaborate with our partners in the NHS to provide localised specialist support and access to new treatments.
This year the National Institute for Health and Care Excellence (NICE) recommended that Translarna be made available on the NHS in England for people with Duchenne muscular dystrophy caused by a nonsense mutation. This completed the access journey for the first treatment in our field. Since we began the push for this treatment in 2016, great strides have been made in treatment development and NHS availability. By the end of this reporting year we were working on access to 12 treatments for five different conditions.
But more must be done, and we are pleased to be investing in further funding partnerships.
As a responsible leader we continue to evolve our work to address wider issues of climate change, racism, equality, diversity, and inclusion, so we can help create a safer, better society. This year we launched our equality, diversity and inclusion (EDI) strategy and worked closely with our EDI ambassador to give our community a voice across many platforms.
We have already made great advances that would have been unthinkable just 10 years ago, and we are determined to go even further and faster. Our community makes us stronger and that’s why we worked together to refresh our organisational strategy this year. Bringing together individuals, families and carers, scientists, health professionals, supporters, volunteers, donors and everyone who is close to us across England, Scotland, Northern Ireland and Wales.
Thank you to our dedicated community for graciously giving your time and money throughout the year. And to the scientists, healthcare professionals, our dedicated President Gabby Logan, trustees, and staff team – thank you! The support from everyone has helped us make every day count for people living with muscle wasting and weakening conditions. We are all unique individuals. Together we are stronger.
- Sign up to our monthly e-newsletter and be the first to hear about our latest news, campaigns, research and ways you can support us.
- Download the Impact Report
- Get support from our helpline