For a donation of £1 each child receives a pack which contains a range of activities and fund raising ideas, as well as a pack of sunflower seeds with instructions on how to plant and look after their sunflowers. Children are also encouraged to get sponsorship for their sunflowers, with every child raising £10 or more receiving a special Seeds of Hope pencil case. Teachers of each class involved in the project will receive a support pack with ideas and activity sheets for learning in the classroom as well as outdoors in the garden. Worksheets for teachers at Key Stage 1 and 2 give ideas for introducing sunflowers and the Seeds of Hope Appeal into the classroom. They cover planting seeds, watching them grow and learning how they produce more seeds. Ideally the project is run over the summer and autumn terms. Action Duchenne is also giving a series of child friendly talks at schools about the work of the charity.
Designed to both generate funds and stimulate children’s interest in nature and the environment, the project also provides the opportunity for them to engage with their communities outside of school. It includes activities that support the children’s learning - measuring the flowers, counting the seeds, monitoring weather, drawing pictures, recording data and publicising their efforts. The project has been designed to link many subjects of the national curriculum including literacy, numeracy, science, IT and art and design.
Duchenne Muscular Dystrophy is a muscle wasting disease that affects boys and very occasionally girls. It affects 1 in 3,500 male births, affects 2,500 people in the UK and 40,000 globally. Action Duchenne is the only national UK charity focused on raising awareness and funding for Duchenne Muscular Dystrophy. The charity aims to find treatments or a cure for Duchenne by funding research and clinical trials, campaigning to make sure that everyone has access to the best standard of medical care, providing up to date support to families living with Duchenne and also to run a specialist education programmes (one of which received National Lottery Award in 2011).
Nick Catlin CEO of Action Duchenne said; “This is a great way for children to appreciate the wonders of nature. They learn about the environment and growing plants, in a fun and interesting way, while helping those less fortunate than themselves.
“As government grants are cut, charities like ours must find ever more ingenious ways to raise the funds needed to continue our critical work in finding viable treatments and a cure for this devastating disease. Despite finding the gene that causes the condition in the 1980s there is still no cure, although scientists say we are tantalizingly close. Action Duchenne is committed to not only finding a cure, but to raising awareness and improving medical care, which can substantially increase both quality of life and life expectancy. Action Duchenne also provides support to families living with Duchenne and educational programmes.”
All proceeds from the campaign will go towards funding medical research - the ‘Seeds of Hope’ for those living with Duchenne Muscular Dystrophy. Entrants can register for the competition on the Action Duchenne website from March, www.actionduchenne.org (£1 per participant)
To take part in the Action Duchenne Seeds of Hope campaign, please go to www.actionduchenne.org and complete the registration form
Notes to Editors
About Action Duchenne
Established in 2001 Action Duchenne aims to support and promote innovative research into a cure and effective medicines for Duchenne/Becker Muscular Dystrophy. The charity, which is led by Duchenne families, aims to promote awareness of the condition, to improve care services, and provide access to a range of educational and support/development programmes for people living with Duchenne at every stage of the condition. This is achieved by working in partnership with government agencies, NHS and care organisations, other charities, academic, scientific and research groups, and biotech companies worldwide.
Action Duchenne is actively campaigning for best practice in care for Duchenne based on the publication of an international consensus document in Lancet Neurology in Jan/Feb 2010. The published article was the product of an extensive review by 84 international experts in Duchenne Muscular Dystrophy diagnosis and care, and was supported by the Centers for Disease Control (CDC) in the US. It provides an expert guide to recommendations on the multidisciplinary care that should be available to all individuals with Duchenne. Several Duchenne patient organisations including Action Duchenne and the TREAT-NMD network have helped to produce a ‘Guide for Families’, based on the original academic article, which is written in language accessible to all without a medical background.
Since 2003 Action Duchenne has provided £4m for research projects and partnerships. The charity has worked with the MDEX consortium, Department of Health, and the Medical Research Council to deliver new clinical trials for Duchenne drugs. In addition, it has been instrumental in developing projects with biotech companies both in the UK and US including key projects with AVI Biopharma and Summit.
In 2005 Action Duchenne launched the DMD Patient Registry, a national database that holds gene information of people living with Duchenne that is used to speed up the recruitment of patients for clinical trials. For more information please visit: www.dmdregistry.org
In 2008 Action Duchenne launched the Include Duchenne project in partnership with Decipha. This programme addresses the learning and behaviour needs of those living with Duchenne. In 2011 Include Duchenne won the National Lottery Award for Best Education Project for Decipha. For more information please visit: www.decipha.org
Action Duchenne promotes social inclusion within the community for young men living with Duchenne through its Genius programme. For more information please visit: www.actionduchenne.org/
In 2010 the National Advocacy Council was launched to spearhead the lobby for government funding for research into Duchenne and to improve access to Standards of Care. www.actionduchenne.org/
Patrons of Action Duchenne include: actress Helena Bonham-Carter, cellist Julian Lloyd-Webber, journalist & broadcaster Martin Bashir and radio broadcaster & media trainer Susan Bookbinder. In addition, Richard Goodman, one of Great Britain’s leading young athletes is an Ambassador for Action Duchenne,
For more information please visit: www.actionduchenne.org
CEO, Action Duchenne
Tel: 0208 556 9955
PR Artistry Limited
Tel: 01491 639500