Duchenne is a life limiting disease resulting from damage to the dystrophin gene. It hits 1 in 3,500 male births in the UK.
The availability and quality of care for young people with Duchenne during later teenage years, a critical period of life when preparing for adulthood, is often poor or non-existent in many areas of the UK.
The availability and quality of care for young people with Duchenne during later teenage years, a critical period of life when preparing for adulthood, is often poor or non-existent in many areas of the UK.
Action Duchenne’s ‘Takin’ Charge’ project is aimed at 14-19 year-old males who are going through ‘Transition to Adulthood’, preparing them to reach their full potential in their twenties and beyond.
Nat Sloane, who is the Big Lottery Fund’s England Chair, said: “Action Duchenne is giving young men living with this rare muscle wasting disease the chance to take control over their lives and reach their full potential. I am delighted the Big Lottery Fund can help groups like this make such a difference to individual lives.”
Nick Catlin, CEO of Action Duchenne points out: “Advances in Standards of Care and medical breakthroughs have extended the life expectancy of young men living with Duchenne from late teens to 30/40 years. But support for the learning and education of these young men has not kept up and our ground-breaking new programme is designed to help them become better prepared for life after school.”
He added “Achieving Lottery funding marks a significant milestone in our history by recognising the value of our services and the magnitude of our efforts in the community. ‘Takin’ Charge’ is the next step to giving our boys independent, rewarding lives and we are truly grateful to BIG for making our project a reality.”
Action Duchenne’s project promotes self-advocacy and independent living and covers important areas such as employment and sexual health. Working closely with the Centres of Excellence, the project aims to offer an accredited e-learning programme that will help equip young people with Duchenne to become advocates for themselves, opening the door to new opportunities in education and employment.
Mark Silverman, who is a trustee of Action Duchenne said, “We are absolutely delighted to win this funding for the Takin’ Charge programme. It is not so long ago that the outlook for Duchenne patients was pretty bleak with no hope, now at last we are seeing recognition of the changed expectations for young people with Duchenne.
Nat Sloane, who is the Big Lottery Fund’s England Chair, said: “Action Duchenne is giving young men living with this rare muscle wasting disease the chance to take control over their lives and reach their full potential. I am delighted the Big Lottery Fund can help groups like this make such a difference to individual lives.”
Nick Catlin, CEO of Action Duchenne points out: “Advances in Standards of Care and medical breakthroughs have extended the life expectancy of young men living with Duchenne from late teens to 30/40 years. But support for the learning and education of these young men has not kept up and our ground-breaking new programme is designed to help them become better prepared for life after school.”
He added “Achieving Lottery funding marks a significant milestone in our history by recognising the value of our services and the magnitude of our efforts in the community. ‘Takin’ Charge’ is the next step to giving our boys independent, rewarding lives and we are truly grateful to BIG for making our project a reality.”
Action Duchenne’s project promotes self-advocacy and independent living and covers important areas such as employment and sexual health. Working closely with the Centres of Excellence, the project aims to offer an accredited e-learning programme that will help equip young people with Duchenne to become advocates for themselves, opening the door to new opportunities in education and employment.
Mark Silverman, who is a trustee of Action Duchenne said, “We are absolutely delighted to win this funding for the Takin’ Charge programme. It is not so long ago that the outlook for Duchenne patients was pretty bleak with no hope, now at last we are seeing recognition of the changed expectations for young people with Duchenne.
“They are increasingly living much longer and whilst variations in standards of care still exist across the United Kingdom, people living with Duchenne can reasonably expect to have an adult life where they take their place in the community and make a positive contribution.”
Two other programmes will run in parallel with ‘Takin’ Charge’ : ‘Letting Go’ will support parents of young people going through Transition to Adulthood, giving advice and strategies on how to best to promote independence, and ‘What about Us?’ will support siblings of young people with Duchenne aged 14-19 years.
FACTFILE:
The Big Lottery Fund is the largest distributor of Lottery money to good causes. It is responsible for delivering 46 per cent of all funds raised for good causes (about 13 pence of every pound spent on a Lottery Ticket) by The National Lottery.
Since June 2004, BIG has awarded over £3.6bn to projects supporting health, education, environment and charitable purposes. Most of its funding is awarded to voluntary and community sector organisations.
BIG delivers funding throughout the UK, mostly through programmes tailored specifically to the needs of communities in England, Scotland, Wales or Northern Ireland as well as some programmes that cover the whole UK.
BIG is a non-departmental public body sponsored by the Department for Culture, Media and Sport (DCMS).
For more information, please visit: www.biglotteryfund.org.uk
Two other programmes will run in parallel with ‘Takin’ Charge’ : ‘Letting Go’ will support parents of young people going through Transition to Adulthood, giving advice and strategies on how to best to promote independence, and ‘What about Us?’ will support siblings of young people with Duchenne aged 14-19 years.
FACTFILE:
The Big Lottery Fund is the largest distributor of Lottery money to good causes. It is responsible for delivering 46 per cent of all funds raised for good causes (about 13 pence of every pound spent on a Lottery Ticket) by The National Lottery.
Since June 2004, BIG has awarded over £3.6bn to projects supporting health, education, environment and charitable purposes. Most of its funding is awarded to voluntary and community sector organisations.
BIG delivers funding throughout the UK, mostly through programmes tailored specifically to the needs of communities in England, Scotland, Wales or Northern Ireland as well as some programmes that cover the whole UK.
BIG is a non-departmental public body sponsored by the Department for Culture, Media and Sport (DCMS).
For more information, please visit: www.biglotteryfund.org.uk
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