Action Duchenne Expands All-Through Support into Scotland

Action Duchenne Expands All-Through Support into Scotland

PRESS RELEASE

FOR IMMEDIATE RELEASE:

Action Duchenne to deliver vital support to Scottish families impacted by Duchenne Muscular Dystrophy thanks to the National Lottery Community Fund Scotland.

Action Duchenne is delighted to announce that we have received funding from the National Lottery Community Fund Scotland for 3 years enabling us to deliver vital support to Scottish families impacted by Duchenne Muscular Dystrophy.

“Every day National Lottery funding is changing the lives of thousands of people in communities across Scotland. The project, delivered by Action Duchenne is a great example of community activity in action, showing just what can be achieved when people come together for a common cause or to help others. National Lottery players can be proud to know that the money they raise is helping to support this vital work which is making a real difference to so many.” Kate Still, The National Lottery Community Fund Scotland Chair.

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.

As a charity led by the Duchenne Muscular Dystrophy community, our All-through Support programme responds to gaps in support identified by families living with Duchenne and was co-developed with them.

This vital programme delivers personalised practical and emotional support for families at every step of their Duchenne journey from their initial diagnosis through to palliative assistance and bereavement. This includes:

• 1:1 support, counselling and peer group support for families at diagnosis and as the condition progresses.
• Workshops and seminars to educate young people living with Duchenne, their families, and healthcare providers about the latest research, treatment options, and best practices in managing the disease.
• Assisting young people with transitions from primary to secondary school and also into adulthood through skills training, mentoring, peer networks, and mental health support.
• Advocating for families with social services, education, clinicians, housing and other professionals.
• Helping families understand end-of-life pathways and make difficult care decisions, facilitating difficult conversations, and offering bereavement support.

“We are incredibly thankful to The National Lottery Community Fund Scotland for their support, which allows us to expand our vital services for families living with Duchenne muscular dystrophy.

This funding enables us to empower families with the care, knowledge, and community support they need to navigate the challenges of Duchenne with strength and hope. Together, we are helping to improve quality of life, foster resilience, and build a connected, supportive network across Scotland. ” Florence Boulton, CEO of Action Duchenne

If you are a Scottish family living with Duchenne register here and one of our support officers will be in touch or contact info@actionduchenne.org for details of how we can help.

ENDS

For all media enquiries please contact Lizzie Deeble: lizzie@actionduchenne.org

Notes to Editors

About Action Duchenne

Formed in 2001, Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy. We have a clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy.

Our work to date has seen over £10m invested in research, educational programmes and campaigns.

We are delivering our vision through three core objectives:

• Developing effective treatments for all by funding research, educating clinicians and researchers, supporting clinical trials and campaigning for access.
• Building a community by uniting families, educating about Duchenne and raising the profile of the condition to a wider audience.
• Striving for a more inclusive society by promoting the importance of human equality, day-to-day acceptance of disability and accessibility for those with Duchenne.

Our Current Events

You can find links to our online support groups and information about how we can support schools with assemblies, workshops and staff training, and to register for our newly launched webinar series.