Uplifting and empowering

By Florence Boulton, National Director

This month seems to have been action packed for us here at Action Duchenne. You would think that after a year at the helm here, I would be accustomed to the constantly evolving and growing that we are doing as an organisation. However, I am still in awe of the children, young people and adults who live with Duchenne muscular dystrophy and their families, compounded this week by news from the Berardelli family from Scotland.

A story of love, teamwork and family

Mum Elspeth and Dad Paolo, updated me on the amazing achievements of their eldest son, Fergus, who, in celebration of his 18th birthday climbed the 10 peaks in Glencoe. He completed his mission in an incredible 10 hours, and his younger brother Giorgio who lives with Duchenne, climbed up the Lost Valley to meet him, achieving an epic feat himself. 

Fergus selflessly asked his friends and family to donate to the Action Duchenne and local mental health charity, Ewens Room, in place of birthday presents. We have made sure that their significant donations have been restricted and every penny goes to Duchenne Research via our Big Ideas Fund. 

I wanted to share this uplifting story of resilience, teamwork, determination and love with you, along with a photo of the brothers together, as it truly made my day and I hope it makes yours. 

We’re coming to a venue near you!

You may have seen our announcement launching the Duchenne Science on Tour 2 events! I am so excited to be bringing my team to 24 venues across the country, helping Duchenne families make important decisions around clinical trials, steroids and their child or young person’s care. Places are already booking up quickly, so if you are hoping to come, I would urge you to book as soon as you can. 

We have been asked by some families if they can attend the Science on Tour 2 events if they came along to last years’ sessions. The answer is yes, absolutely! The content is brand new and very different this time so please come along, everyone is welcome.

Becoming a Member

For those of you who are Action Duchenne Members (people who donate monthly) I will see you at the Members’ Meet Ups across 5 of the venues we are travelling to. I am greatly looking forward to seeing you all in person, to thank you personally for your support and to share our progress towards reaching the charity’s objectives. 

We have recently updated our Membership Benefits, and I hope that many of you will join our growing Membership. You will receive:

• A goody bag, including a t-shirt and members’ enamel pin badge
• ‘Buy-one-get-one-free’ on tickets for our Annual International Conference
• Invitation to exclusive Members’ events 
• Regular newsletter updates

Regular donations from Members directly help us to plan long term, achieve our vision and undertake projects on a larger scale than we could otherwise do.

It is easy to set up, simply follow the link below, thank you.

Coming out of lockdown

It is exciting for my team and I to be making plans for face-to-face meetings and events over the next few months.  Of course, we will be adhering to the rules in place to keep everyone safe at all times.  I know how much the team has missed seeing you all, and how much we are looking forward to the time we can be together again. 

Along with the Science on Tour 2 events and the Members’ meetings we are currently recruiting for a number of really exciting events, from marathons to virtual ‘at your pace’ events for all, organised by our new Support and Engagement Officer, Victoria. 

You may want to improve your fitness and have a goal to reach, or perhaps you want to use training as an opportunity to get out in the sunshine, whatever your motivation, please sign up. We are looking for 2-3 runners to take on the virtual full/half Edinburgh marathon, we have 2 spots left on the virtual London Marathon, and have a number of places in the Vitality London 10,000 which we’d love to fill asap. 

Helping you get active

This past year, Duchenne families have faced the most difficult situation, to stay safe at home shielding, risking irreparable muscle damage, damage which we are aware many of our wonderful families have experienced during lockdown.

We are now approaching (tentatively) a time where people within the Duchenne community will be starting to emerge back into the world. We want to help you and your family get motivated and start to get active again.

Over the coming weeks, we will be sharing ideas for you to fundraise safely in your local area, giving you something to focus on as you come out of lock-down. We are sending out free fundraising starter packs to help you get your activity underway. You could set up a cake sale outside your house (with an honesty box which we’ll provide), or perhaps a dress down day at school, or even start to roll/walk to school after the Easter Holidays, enjoy the sunshine and get some fresh air.

Whatever you decide to do, just start small, take it steady and use the fundraising as a way to get you back out into the world again.

Changing Places news

I was heartened to read the news this week that the government has allocated £30 million in funding to install Changing Places toilets in existing buildings in England. I know how much this will have a positive impact on many of you, and I am delighted to share a blog written by our Lead Volunteer, Contributor and Duchenne Mum, Lizzie about this important step.

If you would like to share your story with us, we’d love to hear from you, please contact us directly info@actionduchenne.org and as always, we are here for you when you need us.

Take care and stay safe,

Florence