Testimonials
We really enjoyed the Action Duchenne International Conference 2019, held at the Jurys Inn Hinckley Island Hotel on 15 and 16 November.
Here’s just some of the great feedback from families, researchers, supporters and companies attended the event;
Lots of useful information held in a great venue. Could not fault it in any way.
Duchenne Dad
I learnt so much about Duchenne muscular dystrophy. Everyone I spoke to and everyone I saw were all so friendly and more then willing to share their knowledge.
Duchenne Uncle
The sessions were well planned out and the registration process was smooth and organised. Speakers were informative and were experts in their fields. Sessions were well presented. Hotel venue and accommodations were excellent.
Duchenne Parent
Welcoming supportive and positive. With our son being newly diagnosed I was apprehensive about feeling overwhelmed but I came away feeling better and less alone which I did not expect to feel.
Duchenne Mum
Great, welcoming atmosphere. An excellent conference at a great venue – 10 out of 10 Action Duchenne.
Supporter
Family-friendly
My kids joined me this year and both want to go next year again…
International Duchenne Mum
My eldest son is a sibling and he absolutely loved the Hang Out, thank you so much Sam for making it awesome. My son with Duchenne loved meeting friends new and old in the Kids Club. It’s such a wonderful place for them to feel completely at home to be themselves.
Duchenne Mum
What was your favourite session?
Talking to Children about DMD. The speaker was very knowledgeable and yet approachable. We are all mad keen to know about “cures” but – given the pace of research – living with DMD is a priority.
Duchenne Grandparent
I think that the Practical tips, education, social aspects and support/ psychology was covered very well and is extremely important as not covered much elsewhere. The Pathfinder sessions are so valuable both for individuals and their families affected by DMD/ BMD but also for clinicians/allied specialists. The interaction with industry at this conference is invaluable. I think that the mix of research related and other topics is right and got better year by year
Clinician
The Company and researcher Q&A was very enriching to see the concerns of the families and the different points of view of the companies.
Pharmaceutical Company Representative
The session on wishes made by people living with Duchenne.
Duchenne Dad
The two AAV trials that are getting close to tangible results were the stand out presentations.
Duchenne Dad
I most enjoyed the session entitled “Clinical trial experiences, considerations, and ethics” as the mothers of two boys that participated/are participating in clinical trials gave their perspective on the experience. Having an ethicist as well as a respected principal investigator on the panel helped provide nuanced information. I also enjoyed the final session of the day with Q&A for the pharmaceutical companies as this gave us an opportunity to hear more about what is important to families.
Pharmaceutical Company Representative
Adult research with consultants in DMD Pathfinders session as more practical advice for adults, and could discuss openly with questions and get advice from specialists with knowledge of the condition.
Duchenne Parent
Duchenne 101 and practical tips – could have listened to this all day – so useful.
Adult living with DuchenneDuchenne Mum
Who were your favourite speakers?
Volker and Francesco, they’re like a comedy duo, but with good science.
Researcher
Neil Bennett, really clear, fun, considered, clarified questions, really knowledgable and used easier language
Hospice Representative
Ellie, the sibling who spoke magnificently – I know she will have struck a chord with everyone in the room. Outstandingly brave and honest.
Attendee
Angela and Lynnette were excellent in giving their insights into living with Duchenne
Research Nurse
David Schonfeld who delivered the session about how to speak to your child about Duchenne was incredible. His responses were very well-judged and sensitive, but also very realistic in approach.
Duchenne Mum
Manual handling and learning and behaviour speakers both gave very useful information and both had great experience.
Duchenne Mum
Enjoyed speaking to adults with Duchenne as my son is 16 and will soon be in the transition to adult services.
Duchenne Mum
Annamieke was great at explaining all the genetics side in a simple manner.
Duchenne Mum
What is important to you at the Conference?
It’s fantastic that there’s so much research going on. But living with Duchenne and the impact of Duchenne is what is of day-to-day concern.
Duchenne Dad
All of these things are important to us as we are very new to this world. Any information we can get our hands on is useful for the immediate future and also good for the future.
Duchenne Mum
PTC are very proud to support this conference. Our team members come to learn, be educated, meet families and patients and allow anyone to ask us questions.
Pharmaceutical Company Representative & Sponsor
Had the opportunity to discuss issues and ask opinions and advice from some of the best consultants in the world!
Duchenne Mum
One of the challenges was that there were so many excellent but conflicting parallel sessions so I had to divide and conquer to ensure we have some insight.
International Duchenne Mum
The AD team put on a superb conference providing lots of information and an opportunity for families to socialise in a relaxed atmosphere. Thank you!
Duchenne Mum
About the hotel
The venue and food was brilliant. Staff were friendly.
Duchenne Mum
Location and value for money of hotel was good. The food and timings was good and enjoyed the fact it was a 2 day event instead of 3. First time we attended dinner and really enjoyed it
Duchenne Parents
The availability of accessible space throughout the hotel was excellent and surely was a contributor to the many men attending in wheelchairs.
Duchenne Dad
This was our first conference… A massive thank you goes to your wonderful team for making it so for us this year! Our son especially thoroughly enjoyed himself to which we was quite concerned about! You guys put his and our minds to rest and we all felt very comfortable indeed! THANK YOU TO EVERY SINGLE PERSON who puts an incredible amount of work into making it so.
Duchenne Family
The Jurys Inn was a great venue clean helpful and friendly excellent value for money
Duchenne Dad
Thank you Thank you Thank you xxx
Duchenne Family
Thank you to every single person who attended this year. We are looking forward to welcoming you all in 2020.
