The workshops and having so many opportunities to ask specific questions of the drug companies was fantastic. We really felt that we had the chance to get information that we wanted and needed and that everyone involved was so approachable. - Penny Southall, Parent


Action Duchenne is a phenomenal organization, and they really lead the way in supporting DMD families in the UK.  I can't say enough, and Diana is simply fabulous.  Mental health care is an area that tends to be overlooked by most clinicians in the UK, so this is really an area that will be of great benefit for the DMD families (attending the Conference) - James Poysky


A strong field of international speakers, A good mix of subjects - Steve Winder, Sheffield University


Well organised yet again. - Kate Maurice, Parent


It is always good to have the opportunity to meet up with other families, hear from older people with Duchenne, find out about ongoing research and try new assistive technologies. We were especially grateful for the enormous input and openness of the Duchenne Pathfinders. Communication about the event was very good and all staff and volunteers very pleasant, knowledgable and helpful. The dinner was really enjoyable too. - Penny Southall, Parent of a 16 year old living with Duchenne


It was one really good conference. I really enjoyed the talks which were presented in a way so everyone can understand and find so many more things about Duchenne Muscular Dystrophy. - Evelin Milev, Student


The integration with DMD Pathfinders throughout the conference was unique, it made the lectures and workshops much more user lead, using the real experts like Jon Hastie & Mark Chapman to encourage or inspire the younger generation and parents through their life experiences. The accommodation and the necessary disability equipment like a hoist, electric bed provided was organised perfectly. I couldn't ask for anything more. - Vivek Gohil, young person living with Duchenne


It was great to broaden my knowledge and gain a better incite to the condition. How to help manage it and more importantly how to support with other areas of life. It will help to do do a better job because it helped me to see the journey of the Duchenne men and their families. I felt very privileged to hear the testaments of the men and what their success despite the condition. - Jenny Kay, PA to a young person living with Duchenne


Isn't that the best complaint ever, too much to chose from...! The conference was just fantastic, an amazingly professional, comprehensive, informative, supportive, inspirational event, a huge credit to the very small team of Action Duchenne. I really loved seeing the boys/young men who have Duchenne being there in such numbers, and leading so many of the talks. They were truly inspirational. It has been wonderful to see how much the Taking Charge programme has enabled them, and to see the engagement that DMD Pathfinders offers them. - Janet Bailie, Parent


I felt this was a really friendly conference. I liked the small round tables as it was more personal and I got a lot out of the question and answer sessions. I thought the range of speakers and presentation styles from formal presentations to smaller more informal discussions really suited the variety of participants. It can be tricky to arrange a conference that can meet the needs of parents, professionals, patients and those with an interest in the condition. Catering for different professional groups on it's own can be challenging as nurses, doctors, AHP's, scientists, pharma etc can all have different needs but the Action Duchenne team did this brilliantly. Well done everyone, I think it was really hard work but most definitely a very worthwhile conference and I was privileged to participate in it. - Marina Di Marco, Principal Neuromuscular Physiotherapist, QEUH 


All the people we're great, some great presentation, I found the less medical ones the best, the support to families sessions. Nice to meet the people and get updates. Great to see Harry Hill - Owen Rogers, Parent


The Action Duchenne conference in November 2016 was the first one I’ve ever volunteered for. I really didn’t know what to expect but with so many friendly people there it was an absolute pleasure to be a part of it. Meeting numerous people with Duchenne and their families was inspiring and the whole experience is one I’ll never forget. Sign me up for next year! The level of information was outstanding. The support offered to people was second to none and the overall vibe and feel of the conference was extremely positive and uplifting. the venue was great for wheelchair access and the layout was really well thought out. - Klaire Locke, Volunteer Conference 2016


It was my first time attendance. I'm incredibly impressed by the wonderful ambience of this conference. I was very surprised that patients and families who attended the conference were independent, energetic and motivated, which seems to be different from Japan. I'm sure that if patients with DMD and their families in Japan will join this conference, they will be really encouraged and motivated. I really hope patients, families and all kinds of caregivers in the world will be able to work together. - Fumi Takeuchi, Japan


Particularly enjoyed the Pathfinders sessions. The sessions I attended on "Sex and Relationships" and "Adult Health and Well Being" were excellent - the speakers gave very clear information and interesting presentations. Also, excellent session from David Schonfeld - very well balanced and supportive, clear information to support families. Great to see the presentation from Celine, Janet and the Takin' Charge guys - very powerful message to younger boys and their families. - Helen Goodenough, Treloar School & College


Extremely informative lectures appropriate to my research nurse role. Lectures covered basics to complex topics but all easily presented. Helpful volunteers when getting lost or trying to find rooms. Representatives panels from pharmaceutical companies particularly interesting and a great opportunity for parents to question them. - Teresa Crowley, Neuromuscular Research Nurse


We will be back! We cannot thank you all enough for the time and effort you put into this weekend. You are truly remarkable people with very big hearts - Newly diagnosed parent