ON this World Duchenne Awareness Day, we are very pleased to announce that The National Lottery Community Fund has chosen to support our much-needed ‘All-through Support’ project.
Following diagnosis, individuals and families embark on their Duchenne journey. Along that journey there are significant gaps in the support available to young people, adults and families as they struggle to come to terms with changes, make complex decisions about care and research while trying to lead a fulfilling life that matches their aspirations.
When John was diagnosed it made a huge difference to have people we could talk to, who understood what we were going through, and helped us cope with the emotional stress of the diagnosis, loss of the ability to walk and education, and thinking about employment and end-of-life care.
Professor James Ker-Lindsay, a Duchenne parent
In designing the project we worked with the community to identify the gaps. The National Lottery recognised the importance of filling these gaps and their support, alongside the Garfield Weston Foundation, Demelza Hospice and a consortium of pharmaceutical companies will help us to support:
- Parents through diagnosis – one-to-one immediate and seamless support for every family diagnosed with Duchenne;
- Families to make informed decisions about their child or young person’s care and participation in clinical trials;
- Whole families – through online peer-to-peer support groups, regional support groups and access to free professional counselling;
- Young people transitioning to adulthood – through professional-led residential and online skills training;
- Through end-of-life and bereavement – giving parents a safe place, and helping them retain their place in the Duchenne community.
We are thrilled that The National Lottery is supporting this vital area of our work to support people throughout their Duchenne journey. Alongside partner organisations in the Duchenne, rare disease and wider fields we will bring people together physically and emotionally. This is a vital part of achieving our vision of a world where lives are no longer limited by Duchenne muscular dystrophy.
Florence Boulton, National Director at Action Duchenne
We are delighted to be providing funding to Action Duchenne to deliver their ‘All Through Support’ project. This will make an immediate and lasting difference to the Duchenne community, ensuring that support is available throughout all stages of the Duchenne journey.
A spokesperson for the National Lottery Community Fund
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