The team…work remotely from each other in busy environments, so they don’t often get the opportunity to work so closely for a shared goal. It was good to observe how this played out on the day, and gave me some more information about them which will be useful in the future
Dawn Megginson (TSB volunteers at GBBF)
Working with Action Duchenne as your company’s charity partner or Charity of the Year is a fantastic way to support our work and make a real difference to people living with Duchenne and Becker muscular dystrophy.
“We want a world where people’s lives are no longer limited by Duchenne and Becker muscular dystrophy.”
To achieve our vision we;
- Fund cutting edge research to treat and cure Duchenne (we spent £1,779,652 on research in the past 3 years or 87.8% of our income).
- Ensure that every person living with Duchenne has access to the best possible care (when Action Duchenne was founded in 2001, the average life expectancy for a young person living in the UK with Duchenne was late teens. It is now late twenties).
- We campaign to make treatments available for everyone living with Duchenne, regardless of age, mutation type, location or personal circumstances (we won the battle to get ‘Translarna’, the first Duchenne treatment available on the NHS).
- Manage ‘The DMD Registry’ – we identified the need for a centralised information database to maximise clinical trial access, so we set up and manage the UK DMD Registry.
- Make sure everyone living with Duchenne has the opportunity to achieve their personal aspirations (in 3 years, our transition project empowered 80 young people living with Duchenne to live better, more enriched lives.)
- We provide education and support for families, giving them ground-breaking resources such as our ‘Accident & Emergency App’ (this is being used and downloaded upwards of 400 times per year and saves lives)
- We bring together 600 people from the global Duchenne community to share hope, experience, support, information and power at our Conference.
Its great to see a charity where all their staff are so invested and attentive to those also wanting to help. – Grace Hackett, Alderwood Recruitment
Corporate partnerships
Action Duchenne will work with you to develop a bespoke partnership that engages your employees and matches with your company’s brand strategy.
Electing Action Duchenne as your charity of the year has benefits for your business. Staff morale and motivation is proven to be increased at businesses that support charities, and it’s a great way to build your brand by associating with a successful UK charity.
Take action
If you would like to know more about Charity of the Year partnerships or if you are an employee who would like to nominate Action Duchenne we would love to hear from you.
Contact us, call 07535 498 5060 or email info@actionduchenne.org.
Action Duchenne were just brilliant from the first moment we got in touch with them. It was not just the wonderful emotional support of being able to talk to people who really understand what you are facing, it is the practical support we received.
James Ker-Lindsay (parent)
Some of our corporate supporters
Further reading
