A weekend to remember

Last weekend, I had the utter privilege of travelling to Northern Ireland to visit one of our incredible Duchenne families and their community of supporters. Sam and I were given an exceptionally warm welcome into the loving home of the O’Doherty family from Derry and were proud to be welcoming their family GP, Dr Gavin McAteer on the home straight of his 6 day, 362 mile running challenge.

This kind of feat seems humanly impossible, when you think about the numbers; 2 marathons per day, for almost a week. The sheer grit and determination needed to complete a challenge like this is almost incomprehensible. However, when we watched Dr Gavin, and his crew, Paddy and Ronan come down the hill towards the Guildhall in Derry, their power was palpable. Accompanied by scores of runners in Action Duchenne vests, the team’s final stop before the ‘finish line’ was breathtaking. 

When Dr Gavin met with Niall O’Doherty (who lives with Duchenne) and his family you could see the pride emblazoned across his face. It felt as though the family were able to provide that final push to Dr Gavin and his team to make it to their destination, Malin Head, the northernmost point of Ireland. 

Pushing to the limit

That final 32 miles must have been agony. In this weeks’ interview that I did with Dr Gavin and the team, I discovered the lengths that they went to, to keep Dr Gavin focussed and to literally enable him to put one foot in front of the other. As a short distance running myself, just the thought of how much the team’s encouragement must have meant to Dr Gavin gives me goosebumps.

The visit to Derry has made a lasting impression on me and my life. Meeting the selfless, wonderful people who gave their time and energy so freely to others, spending time with the loving, open, warm yet fierce Duchenne family and of course, helping to bring the community together has been an uplifting experience I will not forget.

Thank you to Deborah and Kevin O’Doherty for your hospitality and warm welcome, thank you to Dr Gavin and his family for dedicating so much time and energy to our life-changing cause, and to the unsung heroes Ronan and Paddy for supporting Dr Gavin so loyally. And finally, thank you to Niall O’Doherty, keep being awesome, you are a credit to your family.

Back out in the community

I feel the impact the Derry weekend had on me is compounded by the fact that we simply have not been able to come out to see our Duchenne families for such a long time! Until now!

Starting next week, we are proud to be travelling the length and breadth of the UK, on our ‘Duchenne Science on Tour’ series of events! I was lucky enough to have taken part in the Luton Science on Tour in 2019 and was struck then by how much Duchenne families get out of the events. This year, we’ve got brand new content, helping you understand about Duchenne clinical trials including what it all means and how and where to get the information you need to make decisions. 

We’ll be helping you understand more about important topics such as steroids and genetics so that you have the knowledge to make the right care choices. As always, the groups will be purposely small, so you feel comfortable and confident in sharing your worries or questions. You may remember last year’s science experiment where we all extracted DNA from strawberries? Well this year there are brand new experiments and practical demonstrations to help you get to grips with the science behind Duchenne.

At each event, our expert science communicator and Head of Research, Neil, will be accompanied by one of our Support Officers. On a couple of the trips (Edinburgh and London) I’ll be there too and will be hosting our first face to face Members’ Meetings since the pandemic! 

Members are vital

Speaking of Members, I am delighted that so many of you have signed up to join our Membership over the past few months. The Members form a vital part of our work, and their regular, consistent donations enable us to plan in the longer-term. Lynnette and I will be hosting our quarterly Members’ Meeting via Zoom on Friday 8th October at midday and you are all welcome to join. I am looking forward to sharing our achievements and plans, including more information about our ‘All-through Support’ project. 

We were proud to announce on World Duchenne Awareness Day that this much-needed project has received support from the National Lottery. I am personally grateful for all the support I received from the Trustees, volunteers and pro-bono consultants who contributed to and supported me in this successful application. Myself and my team are excited to be working on this project in collaboration with our partners and look forward to making a lasting impact together in supporting the Duchenne community. 

I am joined by my team when I say that we can’t wait to see many of you in person over the next few weeks, and online at the Newly Diagnosed family event and the Annual International Conference. 

As always, stay safe and thank you for your continued support.

Florence