It was useful to understand the services available for adults in Cardiff as well as an update on future treatments. Action Duchenne have provided a network of parents to share our experience and keep us informed. – Gareth Hegarty (parent)
On Saturday 20 January 2018, Action Duchenne hosted a Wales round table meeting in Llandough Hospital.
It gave Welsh families the opportunity to get a better understanding of the future outlook for those living with Duchenne in Wales and to see first-hand progress being made which could make major differences in improving the quality of life for those living with Duchenne.
Our wonderful speakers included our CEO Diana Ribeiro, Prof Zaheer Yousef and Dr Simon Barry from the University Hospital of Wales & University of East Anglia. Rachel Salmon, Family Care Advisor for South East Wales and Sarah Gates, Family Care Advisor Abertawe Bro Morgannwg and Hywel Dda University Health Boards.
To start proceedings Prof Zaheer Yousef gave an update of cardiac services, followed by a Q&A which enabled families to ask their own questions. Dr Simon Barry then gave a respiratory update.
We then heard from Kyle’s Goal, a charity established by Katherine whose son suffered a TBI (traumatic brain injury) and had to go to England as there was no neurological rehab within Wales.
Katherine spoke passionately about her vision, to build a centre in Wales to provide a social setting/ physiotherapy, OT therapies and hydrotherapy. A vision the neuromuscular forum share.
Rachel Salmon and Sarah Gates chaired a passionate and lively debate with parents, opening the floor to questions/concerns of the families. All of our families expressed concerns with the lack of opportunities for their young adults to meet up socially.
Here are some of the recommended services available:
The Jubilee Sailing Trust
Their mission is to promote the integration of people of all physical abilities through the challenge and adventure of sailing tall ships on the open sea.
Scanda Vale Hospice
You’ll find a very warm welcome at our hospice day care centre, and all services are offered free of charge. Some of the services available are respite day care, inpatient respite care, holistic therapy, Assisted Bathing, Arts and Crafts as well as free patient transport.
Over the wall
Over The Wall is a national UK children’s charity and a member of the international SeriousFun Children’s Network. We provide free of charge Therapeutic Recreation camps to help children with life-limiting illnesses and their families reach beyond the perceived limitations of illness to rediscover a whole new world of possibilities. Through participation in a proven programme of fun-filled recreational and educational activities, our camps help promote inclusion whilst developing the confidence, self-esteem, coping strategies and peer relationships of all our campers.
Jumbalance
The Jumbulance Trust is an accessible travel charity that exists to make travel possible for adults and children who are disabled or have a serious or complex health condition. They offer groups and individuals the opportunity to take holidays, short breaks or a day out in the UK or Europe by providing accessible coaches called Jumbulances.
The roundtable ended with an update from our 2017 Conference on the progress being made in clinical trials for those living with Duchenne by our CEO Diana Ribeiro. The tone of the talk was positive with a number of clinical trials that have taken place or about to take place being highlighted, showing that a lot of high quality innovative research taking place which should hopefully lead to innovative medicines being provided for those living with Duchenne.
It is interesting to note that there are a number of clinical trials focused on non-ambulatory boys and young adults living with Duchenne, and a number of other newer trials also being non-mutation specific. This highlights that the types of clinical trials for those living with Duchenne is wider than ever before. The newest clinical trials are also using cutting edge techniques to ensure that results are recorded in the best way possible for those living with Duchenne shown by the fact that MRI is being used much more as an outcome measure than ever before.
It was heartening for those who attended the Welsh roundtable to be made aware of the significant expansion of clinical trial capacity in the last few years, including a range of clinical trials that are already open for recruitment or will be open in the future.
Thank you to our speakers and to everyone who attended on the day.
Get involved
-
Contact us 020 8556 9955
-
Help and support
-
Fundraise
-
Other events
It was useful to know learn the availability of cardiac/respiratory care available locally. Broad agreement of support regarding young adults social life and opportunities to meet up – Liza Tercero (parent)
First patient dosed in microdystrophin gene therapy in US
