On Saturday the 21st April, Action Duchenne held its National Meeting in Birmingham. The meeting consisted of talks on research, standards of care and campaigning in the morning and then workshops in the afternoon. These workshops covered the ‘Takin’ Charge’ and ‘Letting Go’ projects, internet safety, Decipha and campaigning goals and strategies. A run-down of the agenda can be foundhere.
Meetings like this are for families: to keep them up to date with research, help them realise the standards of care they should expect and to involve them in campaigning for more research and better care. They are to help families meet others in similar situations and consult specialists. And they are an opportunity to socialise with others who are involved in and passionate about tackling Duchenne.
The day was a fantastic success. The impressive turnout was complimented by the enthusiasm and knowledge of the speakers and families. In what was quite a packed schedule, there was still a great deal of time for families to meet other families, medical and care specialists and Action Duchenne staff. This gave everyone an opportunity to swap information and find out about the experiences of others.
The morning’s talks on research by Nick Catlin, Dr John Bourke and Dr Keith Foster outlined the stages of research for various treatments for Duchenne as well as the most recent results. Current medical trials were also highlighted. A session on Quality of life issues was chaired by Mark Chapman who is an adult living with Duchenne with contributions from Janet Hoskin from Takin’ Charge and Decipha, Celine Barry from Takin’ Charge and Stuart Hatton a young person living with Duchenne. Dr Ros Quinlivan of GOSH and Neil Williamson from Richard House hospice gave presentations on how to get the best quality of life touching on issues such as standards of care and person- centred planning.
The last session before lunch focused on campaigning. How to engage Government and Regulatory authorities toward achieving Action Duchenne’s goals was discussed by Kathy Weddell from the NAC, Eilidh Macpherson, Action Duchenne’s Campaigns Manager, Iain Clarke, RDO Action Duchenne and Weber Shandwick (political consultancy firm). These talks highlighted the need to get involved in campaigning oneself and the importance of campaigning for change in relation to standards of care one should expect , research funding and implementing new treatments.
Informal workshops were
held in the afternoon in which families could consult with experts on a range of subjects. The biggest success of the day, we felt, was the way that families could interact, bring up issues and tell their own story to one another and to specialists. We thank everyone for attending and hope that they enjoyed the meeting as much as we did.
We would love to hear your feedback on the day: what you felt was good and what you feel could be improved. If you missed out on the day and would like more information about the event as well as upcoming meetings then please also get in touch with eilidh@actionduchenne.org. If you would like to sign up or get more information about Action Duchenne’s Transition Project called ‘Takin’ Charge’ please contact janet@actionduchenne.org or celine@actionduchenne.org
