Reflecting on the Action Duchenne conference

BY JON REY-HASTIE
CEO OF DMD PATHFINDERS

Today I have been taking a more leisurely pace to recover from a really busy weekend at the Action Duchenne conference. I found it particularly tiring this year, probably because I have had to coordinate it or dealing with a busy and extended moving process. As a result I wasn’t in the best of spirits when the conference started.

Yet the conference itself went really well, and I couldn’t have asked for more. We had adults with DMD presenting at all of our sessions, in total 13 different people, all with incredibly interesting and engaging stories to tell. I’m thankful to all of them for taking the time to share their experiences, which I know people around the world will now be able to benefit from.

Once we got started I quickly realised that I had no reason to stress. Everything went to plan, so I relaxed and focused on the sessions. The power and value of our conference sessions is immense. I learned things about feeding tubes and tracheostomies that I didn’t know, I got holiday ideas, and I heard stories from other couples that made me reflect on my own marriage and what was important.

During the course of the conference I met many old friends as well as new faces, including the incredible Juri – who really is a true Pathfinder, who travelled over from Estonia, trying to learn everything he possibly could about how to live well in a country where the services and knowledge of Duchenne can sometimes be lacking.

The Action Duchenne conference has always been an important time for DMD Pathfinders. The idea to set up an independent charity resulted from the meeting at one of the conferences. And it has always been an incredibly important event in the DMD community, one where we have a rare opportunity to meet families, young people and adults with DMD and share information, advice and peer support.

This year the conference was handled brilliantly by the amazing Shelley Simmonds and her team. As a CEO, I would be incredibly daunted by being given just a few months to pull together a conference that usually takes a year to bring together, and one which maintains the stellar international reputation it has held for many years. My hat goes off to Shelley for somehow making that task seem effortless.

I’m personally blown away by Shelley who really is incredible and one-of-a-kind. I haven’t met another parent who has dealt with the DMD diagnosis so remarkably. Obviously this hasn’t happened overnight and I know it has been a painful and devastating process, but Shelley has come through it not only with a determination to do whatever she can to improve the life of her son Fraser, but also an acceptance that being disabled and being different doesn’t need to hold you back. In that, her attitude mirrors that of many adults with DMD. We would certainly love to see treatments to mitigate DMD, but in the meantime, we are just getting on with our lives.

I believe her son Fraser benefits immensely, and will continue to do so, by having Shelley as a role model. She is demonstrating that while we all want Fraser and every other young person and adult not to have to deal with Duchenne, the fact that he has it doesn’t make him anything less than his peers, it is just an obstacle to overcome.


That’s why in this conference we saw a rebalancing of the agenda. We still saw some excellent presentations and Q&As with pharmaceutical companies hearing about the new developments in research. But we also had sessions that offered parents support and guidance through living with DMD. And of course the DMD Pathfinders sessions for young people and adults with DMD on health and aspects of daily living. For the first time it felt like the ethos and approach of DMD Pathfinders gelled perfectly with the overall conference.

I’m incredibly excited to see what Shelley will do over the next few years, and DMD Pathfinders look forward to an ongoing productive relationship with Action Duchenne under her leadership. With the intention to both treat Duchenne and support people to live with it, the impact on the Duchenne community could be transformative. No pressure Shelley!