A message from the National Director, Florence Boulton
The past four weeks, since I last wrote to you all, has been a rollercoaster of extreme highs and terrible lows. We have learnt of the sudden passing of another young person living with Duchenne and on behalf of the entire team I wish to send condolences to his family and friends. Losses to the community are devastating and add fuel to our fire to serve our families and work towards our vision of a world where lives are no longer limited by Duchenne.
World Mental Health Day
This Saturday was World Mental Health Day. For me personally, the date is an important reminder that I, as a leader and a parent need to look after not only my own mental health, but that of my family, my team and our community. I would like to emphasise that Action Duchenne is here for you throughout the year. Please do not hesitate to get in touch if you need support or would like to talk.
Remember that you can always reach out to us.
Recognition of our support work
I am delighted to share with you the news that our COVID-19 support work has been recognised by The National Lottery Community Fund. Our support programme ‘COVID-19 will eventually pass, but Duchenne will remain’ has received funding and I am so pleased that the Duchenne community has been recognised through this award.
The grant is relatively small but will help us to fund our vital support and education work over the coming months. A huge thank you to my team (volunteers, trustees and staff), who worked so hard during lockdown to set the foundations for our future projects. You will all have the chance to benefit from this project, please look out for further information on our social media and in the newsletters.
The next few weeks
Last week, we brought together a wonderful group of people in the first of our online sessions specifically for Duchenne Grandparents. The group talked about their own experiences with their grandchildren and supported each other with tips and advice. We have set up a new group, the ‘Action Duchenne Grandparents’ and will be holding a second online session on 30 October. As always, our webinars are free to all and you will be welcomed with open arms.
Speaking of open arms, we are aware that the conference being virtual is enabling lots more people to attend that have previously been unable to.
Recently diagnosed event
With this in mind, we set up a special event aimed at Conference first-timers, and recently diagnosed families three weeks before the main Conference. You will be able to find out more about Duchenne in an overview, including an introduction to basic biology, the dystrophin gene, standards of care, what to expect and how to ensure you are receiving the right care and support.
Our expert science communicator and Head of Research, Neil will take you through an overview of Duchenne research, including how each of the potential treatments work, what approaches are in development and what are the challenges. Then, we’ll take you through an overview of the practicalities of living with Duchenne, from benefits to genetic counselling, wheelchair services to adaptations.
This special session will take place 14:00 – 17:00 on Saturday 24 October online and is free! The aim is to give you confidence and the understanding of ‘the basics’ before the main Conference on 14 and 15 November.
You can register for both sessions in the link below, make sure you tick ‘I am a family member’, then ‘Yes – I’d like to take part in the newly diagnosed event’. All are welcome, please feel free to share the details with your friends.
The team, trustees and volunteers continue to work hard together to bring you the Action Duchenne International Conference. As this event is virtual for the first time, we are on a steep learning curve, but it is opening up some wonderful opportunities. We are delighted to be partnering with international organisations, truly igniting the Duchenne community to come together. Tickets for families are free and everyone is invited! We look forward to seeing you all in person at the ADCONF21, but for this year, we will see you online!
Get involved
As always, we welcome your support, whether you donate to Action Duchenne, are a Member, or perhaps you have volunteered your time to help us or share our online articles with your connections. As we grow our support, education and research projects we will be calling on you, the community to get involved.
Please contact me if you can spare us some time to help deliver our work, or if you have any questions or ideas!
Calling all gamers!
