Action Duchenne
Charity number: 1101971
Website: www.actionduchenne.org
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Description:
Duchenne muscular dystrophy is a rare, muscle wasting condition which occurs mainly in boys and is often diagnosed around the age of 2 to 4. Although there is no cure for Duchenne, improvements in standards of care mean that the prognosis for people living with the condition is better than it has been in the past.
You are likely to hear people mention life-expectancy for people living Duchenne. You will see numbers ranging from 25 to 50, with 30 probably being the most common. But the truth is that nobody knows the “right” number.
It is important to remember that each person is different and has a unique physical makeup. Your child will experiene Duchenne differently to others and giving you a definitive ‘across the board’ life expectancy for your child is impossible and unfair, particularly as standards of care and life expectancy are improving all the time.
Action Duchenne has a very clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy.
We have three core objectives and are proud to spend 87p in every £1 raised on our charitable activities:
Developing effective treatments for all by funding research, supporting clinical trials and campaigning for access.
Building a community by uniting and supporting families, educating about Duchenne and raising the profile of the condition.
Striving for a more inclusive society promoting the importance of human equality, day to day acceptance of disability and accessibility.
While we hope that research and clinical trials will one day lead to a treatment, or cure, for Duchenne, we believe it is vital to support families living with the condition today. We support families from diagnosis through their whole Duchenne journey.
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