Summer ‘holiday’ after lock-down

A message from the National Director, Florence Boulton

At the start of what would normally be the season for summer ‘holidays’, my thoughts go to families in the Duchenne community who have been shielding and who continue to shield. We have heard from our families that many of you have struggled with balancing PAs/care, home-schooling, childcare, work and your own mental health, along with the worry that COVID-19 itself brings. 

Each family has faced their own challenges and made their own remarkable achievements over the past months. From the team here at Action Duchenne, we wish you continued hope and strength as you cope with the most difficult of situations. Certainly, life looks very different now we are reaching the other side of the lock-down, with a new appreciation of ‘the simple things’.  I hope we as a nation remember the incredible efforts of our teachers, doctors, nurses and all key workers during this time.

We are proud to have played our part in helping the Duchenne community through the lock-down and beyond, delivering amazing support projects which have been met with the most wonderful feedback. As you will have seen, we devised a series of webinars (18 so far, with more to come) which have been incredibly popular and helpful. 

Supporting you during the holidays

Tonight, you will hear from expert SENCo, Clair Warner, who will be talking about how to manage during the summer holidays.  Expect hints, tips and hacks on how to manage the kid’s anxiety, behaviour, relationships and siblings. I’m particularly interested in this session, as I am keen to equip myself with skills to help me with my two during the holidays while I continue to work.

We have a whole new set of webinars to take you through the summer, from an evening with Michael McGrath, Founder of The Muscle Help Foundation, two new physiotherapy sessions with Marion Main, an evening of cheese, wine and chat for Grandparents and a session to help you in the return to school – more about these next time!

Duchenne Science on Tour: The Return

Thank you to everyone who got behind our fundraising campaign for the Aviva Community Fund project ‘Duchenne Science on Tour 2’. We were inundated with positive feedback and messages of support, including a wonderful note from our Patron, Helena Bonham Carter.

Once again, we have raised the profile of Duchenne muscular dystrophy with the wider audience, reaching over 30,000 people globally on Facebook alone. With 2,000 interactions and 67 donations, we were delighted with the community’s support of this project and our plans for post-lockdown life. There is still time to support this education project for Duchenne families;

I am looking forward to sharing details of the Science on Tour sessions which we will schedule when it is safe to do so.

Gain power, knowledge and inspiration from anywhere in the world

We have something else to look forward to in post-lockdown land. Since we made the decision to take our Annual International Conference online, I have truly immersed myself in the wonders of the virtual world and am excited to bring you some incredible technology this November. Using a state of the art system, you will be able to watch all the updates on research, care and living with Duchenne from the comfort of your own home. 

When I attended the Conference last year as a volunteer, I saw for myself the power of the event, and it was clear that it’s not just about the sessions. With this in mind, we have made sure the virtual experience will enable you to interact ‘face-to-face’, meeting families, clinicians, researchers, pharmaceutical partners and exhibitors (and of course, our lovely team!).

Hosting the Conference online has given us the opportunity to do a few things differently this year, but many things will be similar. We’ll keep you informed so it’s easy to use and you can get the most out of the sole Duchenne conference this year. 

Look out for the registration launch, and agenda to follow!

As always a big thank you to you all, for supporting our wonderful charity through these difficult months. We’re proud to be delivering our work to help benefit children, young people and adults living with Duchenne and their families, along with the greater Duchenne community across the UK. 

Best wishes, 

Florence