Through the project we hope to equip young people to plan their lives effectively in order to get the best outcomes for themselves and their families
Young people living with Duchenne and their families start planning their future with ‘Takin’ Charge’
Action Duchenne’s new lottery-funded project for young people with Duchenne going through Transition to Adulthood was launched at this year’s international conference. ‘Takin’ Charge’ will enable teenagers with Duchenne to learn important skills and plan for what they want to do in the future. Highlights of the weekend included a ‘The Exon Factor’ Quiz Show with top Quiz Master Neil Williamson, Transition Co-ordinator from Richard House Hospice. This prepared the young people for their ‘Panel of Experts’ where they were able to ask questions of Professor Steve Wilton from the University of Western Australia, Dr Ros Quinlivan and Dr Anton Emmanuel from Great Ormond Street Hospital as well as three older men living with Duchenne Dr Jon Hastie, Mark Chapman and Stuart Hatton.
Dr Janet Hoskin, manager of the Takin’ Charge Project said, “It was fantastic to see so many young people taking responsibility and asking meaningful questions as well as having a lot of fun!”
Sensei Michael Joseph showed boys how Martial Arts could play a role in keeping fit and healthy in another workshop, and Linda Jordan and Ingrid Clark from the National Development Team for Inclusion shared with young people and their parents how to make plans for the future in order that our young people can live aspirational and independent lives. Celine Barry, Takin’ Charge project co-ordinator said, “Through the project we hope to equip young people to plan their lives effectively in order to get the best outcomes for themselves and their families. The session with the NDTI made it clear that having a plan is key to getting what you want for the future.”
On Saturday morning the ‘Takin’ Charge’ group went to Camden City Learning Centre to learn how to use the specially designed e-portfolio with the help of IT consultant Mary Rebelo and Danny from the software development company Just2 Easy. In the afternoon, Paul Casey from the Family Planning Association led the afternoon session ‘Let’s Talk about Sex’.
Brothers Aaron and Jack Ebanks have already put their new found skills, gained during the conference, to good use. Aaron, aged 15, spoke up for himself during a recent day surgery to have a calcium injection, when he informed the doctor performing the procedure that she should use a baby sized cannula. Aaron’s request was eventually conceded leading to a successful treatment.
His brother Jack, aged 13 has recently taken delivery of his new powered wheelchair. However, the chair has been restricted because Jack has not yet received his powerchair road test. Jack asked the physiotherapist at school to contact Wheel Chair Services about this, and as a result has been given an early assessment within the next week.
Father Wayne Ebanks, when asked about the Takin’ Charge programme said; “We are in this for the long haul and sometimes it can feel quite lonely. Getting together with others in the same situation can be very empowering and sharing experiences with others really helps. Everyone needs a helping hand once in a while, no matter how strong you feel. The Takin’ Charge programme has had a great effect on our whole family, it is a joy to see Aaron and Jack taking control and speaking up for themselves regarding their treatment and services. Thank you to everyone at the Takin’ Charge programme.”
As well as working with teenagers living with Duchenne, the Takin’ Charge project aims to help parents be involved and empowered through Person-Centred planning, in order to support their child’s aspirations for the future. Action Duchenne has a number of families who are interested in hosting and attending local regional workshops that will look at best ways of planning individual budgets that will lead to best outcomes for young people. In addition, the ‘What about Us’ project is working with siblings of young people with Duchenne – on Friday Kay Carpenter the sibling worker from Richard House led an afternoon for siblings, enabling them to have fun but also think about issues related to having a brother with Duchenne.
Great fun was had by all!
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/geniusproject
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/NAC
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
Dr Janet Hoskin
Takin' Charge Project Manager
Tel: 020 85569955
PR Artistry Limited
Tel: 01491 639500
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