Takin’ Charge is Action Duchenne’s Lottery-funded Transition to Adulthood Project for young people with Duchenne aged 14 – 19 years. Thanks to interventions such as steroids, cardiac monitoring, night ventilation and spinal surgery young people with Duchenne are now living into their twenties and thirties and beyond. In Denmark where care is optimum there are now more adults living with the condition than children. It’s therefore crucial that we are all supporting our young people to be as independent as possible and to help them develop skills to get the best quality of life as adults.
The Takin’ Charge programme provides aspirational information for boys and their families about the choices available beyond school, including further education, training and/or employment options, independent living including housing options, the impact of good health care provision including the importance of advice on sexuality, health and relationships. Young people complete an e-portfolio that records all of the challenges that they have undertaken in our face-to-face workshops across the year, and/or independently at home or school. They receive a qualification that is accredited by ASDAN and forms part of the Certificate of Personal Effectiveness. The project also gives young people with Duchenne the chance to develop friendships and learn new skills such as animation, music and computing, and to gain the confidence to speak up for themselves when talking to their Members of Parliament or organising fundraising events.
In addition the project also aims to work with other people are affected during the transition years.
(1) Parents: ‘Letting Go ‘ project – Through workshops we aim to provide information parents with the information they will need to support their young people to be more independent in adulthood.
(2) Siblings: ‘What about Us?’ project -We run sibling workshops for younger siblings and older sibling s including specialist advice from a geneticist on the implications of being a carrier of Duchenne Muscular Dystrophy
(3) Adults living with Duchenne 19 years + – This group help to develop and monitor the project through our steering committee and through co producing and facilitating workshops. As older men living with Duchenne they are inspirational role models for younger people.
Here is a short 4 min film about the project that was made for our visit to the Houses of Parliament in 2013 :