Choosing Action Duchenne as your Charity of the Year is a fantastic way to support our life-changing work.
What is Duchenne?
Duchenne muscular dystrophy is a rare genetic condition caused by mutations in the dystrophin gene, which prevent production of a vital muscle protein called dystrophin. The lack of dystrophin makes muscles more susceptible to damage and leads to muscle wasting over time.
People living with Duchenne muscular dystrophy experience progressive muscle weakness and typically need to use a powered wheelchair from their early teens. The heart and breathing muscles are eventually affected and most will require a ventilator in their twenties; life expectancy is around 30 years but has improved with palliative care developments.
There is no cure.
What we do
At Action Duchenne we have a clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy.
We are working to deliver the vision through our 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.
How you can help us
Our dedicated Community Fundraising team and volunteers make it easy for you to choose us as your Charity Partner.
As your Charity Partner or Charity of the Year, we will;
- Offer to meet with your group or team to explain Duchenne muscular dystrophy from a personal perspective and drive their engagement for fundraising.
- Provide fundraising materials, such as balloons, posters, tshirts, running vests to assist your fundraising.
- Recruit volunteers to help at your larger fundraising events if required.
- Keep in touch regularly to provide updates on our life-changing work.
- Provide professional stewardship to you and your team, wishing you luck before events, sending timely thank yous and certificates as appropriate.
- Help make your Year with us fun, enjoyable, professional and worthwhile.
Become a Community Partner
Contact your friendly Community Fundraising Team on info@actionduchenne.org and we will work with you closely to help you adopt our amazing charity as your Charity Partner.
