making muscle wasting history

A great piece on ITV news with John and Seth. Seth looks gorgeous and excellent to see Duchenne in the news it's so important to let people know about it. I went to the meeting in Cardiff on Monday which Rachel Salmon organises for Duchenne families. However, I must admit this focus on getting a family care officer does seem a bit of a red herring to me. I understand that it's completely crap in Wales that you have screening and no support (but still better than no screening if you have other affected children?) but I really don't think the answer is a family care officer. The way people were speaking was as though this was going to be the answer for Wales - oh if they were only that effective! I completely accept someone to help and talk to would be great and to signpost you in the right direction for certain services - but in Wales I'm not sure all those services exist anyway. Surely what we should be fighting for is a Centre of Excellence for Neuromuscular disease in Wales. We have trials happening and others on the horizon (I know the Ataluren news is not great but there are other irons in the fire and things happening at various stages) - how are the kids in Wales going to be part of these trials - by travelling to GOSH or Newcastle? We shouldn't have to be choosing about fighting for care OR research - surely they go hand in hand - we should have best practice care based on research - isn't that what translational research is all about? We have to have specialists in Cardiff who can help deliver potential treatments through trials surely as well as top qualified physios /OTs etc who are all part of a mulit-disciplinary centre of Excellence. My fear is the Assembly will say - 'yes here you are here's 2 family care officers - now off you go' - and that completely lets them off the hook from providing the sort of multi-disciplinary care that Duchenne demands. It will cost them what £80,000 max instead of the millions it should be costing them to provide for the needs of kids with Duchenne and give them a real hope for the future based on funding top quality care and research. There seemed to be a lot of anger in the room on Monday that there was no family care officer but I really think it's essential that we're channelling our energy to get what we really need for our kids and not be fobbed off with a few wheelchairs and a family care officer which is not the answer. I know there are plenty of people in other charities who will tell me to be 'realistic', but if you don't ask you don't get. I wouldn't have thought it was 'realistic' for an 80% survival rate for childhood leukemia 10 years ago but it's happened with a lot of hard work and a huge amount of funding.