Support and resources for our Duchenne community
A message from the National Director, Florence Boulton
With the impact of COVID-19 on our personal and professional lives growing and changing every day, my team are watching developments closely and are constantly considering how we can use our resources to positively support you and each other through this challenging time.
To this end, we are moving Action Duchenne’s support offering wholly online for the next few weeks. Planned physical events are being postponed or converted to webinars, and we are busy writing and commissioning content to share advice and stories on how people are managing their work and families lives in these unusual circumstances. We have set up a Coronavirus (COVID-19) advice page on our website to share your questions and concerns with our community and to support each other.
Regular support webinars
We have created a plan to host regular webinars. Our Community Support team are working with each of the speakers, scheduling dates, marketing and recruiting participants for the free support webinars. If you have any suggestions for topics or other supportive ideas, please contact Lynnette.
Below is a list of the Webinars we have planned, relevant articles from us and from our expert contributors and a link to our discussion forum.
- Keeping children and young people active – physiotherapy series with Marion Main;
- Isolate (but don’t vegetate) motivate and activate – exercises for all (15 April)
- Making stretches fun (29 April)
- Exercises on the floor and in chairs (13 May)
- Splints and orthotics – what to do if there’s a problem…. (27 may)
- Looking after mum and dad in the madness! (10 June)
- Summary session (24 June)
- Keeping young adults and adults active
- Adult relaxation for the Duchenne community (27 April)
- Resilience and mental health
We will continue working on the plan in the coming days and will keep you posted.
Blogs and sharing
We have also asked our families to write blogs about their experiences during the lockdown. Below is a list of the three blogs have already been shared and more to follow:
- #DAY18OFISOLATION, by Ashley, Duchenne Mum
- Isolation for the nation, by Darren, Duchenne Dad
- 84 days later, by Kieron, Duchenne Dad
- Supporting families – Lynnette’s perspective
Fundraising
Our Support Team have launched the ‘Make the most of your time at home’ campaign, to encourage people to set up their own fundraisers during lockdown. We are encouraging everyone to continue to support what we do and more importantly to support our Duchenne community.
We are also working on an external appeal for support, to be more direct, hard hitting and impactful to people outside of the Duchenne community.
Frequently asked Questions (FAQs)
Our FAQs section is packed full of practical tips helping our community to keep well. Here I have selected some of the most relevant questions:
- Can my carers/PAs still visit if I am shielding?
- How can we exercise if we are self-isolating?
- Is there a vaccine against the COVID-19?
- I have had Coronavirus, will I have an immunity and can I continue to mix with people who don’t have it without infecting them?
Other helpful resources
We are constantly looking out for helpful content and resources to support you. Here are some of my favourites and if you have any other suggestions, please contact me;
Thank you
I would like to take this chance to thank our amazing volunteers and staff who are working tirelessly to deliver our support service to our community in these uncertain times. Their dedication and hard work is truly amazing!
Finally, I would also like to thank you for your continued patience, encouragement and understanding during this incredibly challenging time.
Now, at your time of need, we are there with you, please don’t struggle on feeling alone, get in touch with us so we can help you navigate the next few months. You are my priority, you and your families, so let us help you.
Please keep well and stay safe.
Florence
Virtual Bingo
