As we mark International Days of Persons with Disabilities today, 3rd December, we are delighted to share significant milestones in our ‘All-through Support Programme, and announce vital new funding. This UN-recognised awareness day aligns with our vision: to create a future where lives are no longer limited by Duchenne muscular dystrophy. As part of our continued drive to ensure that everyone living with Duchenne is given the support they need to reach their potential in an inclusive society, we are thrilled to announce new funding that will enable us to expand our All-through Support programme.
How the All-through Support Programme is Changing Lives
Launched in 2021, our All-through Support programme, supported by the National Lottery Community Fund; the first of its type for Duchenne muscular dystrophy. This programme addressed gaps in the support available to families across the UK, identified through consultation and community engagement.
Duchenne Muscular Dystrophy is a rare, complex, devastating and life-altering diagnosis. Families often find that health, social care, and education professionals lack the knowledge and resources to provide adequate support. Many feel overwhelmed by complex scientific information and life-changing decisions about treatment, housing adaptations, and family planning. The emotional toll includes dealing with anticipatory grief, guilt, and fear, often compounded by isolation.
This UK-wide programme bridges these gaps through:
- Science education to empower families with knowledge about Duchenne
- Support for Newly Diagnosed families.
- -One-to-one emotional support from our dedicated outreach and support officers.
- Online group support and group counselling programmes.
- Guidance for young people transitioning to adulthood.
- End-of-life and bereavement support.
One parent shared: “We have built a friendship, a bond of support. We have people who understand how it feels, people we can talk freely with. Our journey is difficult, this makes it easier. The Action Duchenne team, new friends and support bubble give me hope.”
Expanding Our Support across the UK
We are delighted to announce that we have received some vital grant funding from trusts and foundations and a consortium of pharmaceutical companies focusing on families across the UK. These families face unique challenges such as fragmented local services and a lack of localised support.
Through collaboration with NHS and local outreach, we aim to foster independence, reduce isolation, and improve emotional well-being. Tailored support will empower families from diagnosis to adulthood and beyond.
A parent shared: “The impact of this will be transformative for young people living with Duchenne and their families. We will not only enhance their quality of life but also equip them with the tools and confidence to advocate for themselves and their futures. This support will foster greater independence, reduce feelings of isolation, and improve mental and emotional well-being, creating a positive ripple effect that extends throughout families and communities. The strong network of peer support fostered through this programme will provide ongoing encouragement and connection, ensuring that no one faces their challenges alone.”
Join Action Duchenne as a Community Champion!
Our work is shaped by listening to families and addressing their needs. As we expand our work in all regions, we need your help to connect with local services and reach more families. Could you volunteer as a community champion? Your support could transform lives in your community. If you could help us to make a real difference to the lives of children, young people and families in your community we would love to hear from you: please get in touch info@actionduchenne.org
Grateful Thanks to Our Funders
We are immensely grateful to our new funders, including the Albert Gubay Foundation, the Hugh Fraser Foundation, and pharmaceutical partners Pfizer, Sarepta and Wave Sciences. Their support enables us to continue delivering life-changing programmes in the coming year (s).
“We are honoured to support Action Duchenne in this important initiative. The Foundation received many strong proposals, but Action Duchenne’s unwavering commitment to supporting vulnerable individuals and their families deeply resonated with us. Their dedication to ensuring that no one living with Duchenne faces the emotional and practical challenges of this condition alone is closely aligned with the core values of The Albert Gubay Charitable Foundation ” Albert Gubay Foundation
[The Albert Gubay Charitable Foundation’s purpose is to fund projects run by registered charities in England, Wales, Isle of Man and Republic of Ireland which change the lives of people most in need. Albert Gubay was an exceptional man; an entrepreneurial genius who, in his lifetime, created a business empire that was worth over £700 million. His determination, drive and passion to create a lasting legacy was borne from a pact he made as a young, penniless man where he vowed to give half of the wealth he created to the service of God. That vision was to become a reality, but he went much further and ended up leaving most of the wealth he created to The Albert Gubay Charitable Foundation so that causes such as those to which Action Duchenne are dedicated, could be helped.]
Together, we are building a future where lives are no longer limited by Duchenne muscular dystrophy. Thank you for your continued support as we work towards this vision.
“This much-needed funding will enable us to continue providing the essential tools and community support that families living with Duchenne require. It represents a critical step in ensuring that no one faces this journey alone. As we look to the future, we are actively seeking match-funding to sustain and expand this vital programme in the years to come.” Florence Boulton, CEO
