A message from the National Director, Florence Boulton
Lock-down has been a time of grief for many, losing loved ones at a time when we are unable to grieve in the traditional way. Families in the Duchenne community have talked to us about a feeling of loss in their lives; from loss of function in their young people and a loss of precious time. We have continued to support our vulnerable families through this difficult and for some, devastating period.
With the news that shielding will pause for everybody in England on 1 August, there is a glimmer of light at the end of the tunnel, but I know that the virus is still present in the country and that many families will face difficult choices about returning to work, school, university and their daily lives. We will continue to offer up-to-date advice and support for families through this difficult time.
In the meantime, if you have any concerns, or feel that an early end to shielding would be beneficial for your family, please talk to your consultant who will be able to give you advice based on your individual situation.
Webinars
I am proud to be part of the team that have delivered these unique online sessions over the past weeks. We have brought Lead Physiotherapist from GOSH, the renowned Marion Main into the front rooms of our families, enabling them to learn new tips and tricks to help keep their children and young people active in lock-down and beyond. The Relaxation Coach, Jolene, took us through gentle stretching, mindfulness and guided relaxation over four sessions, which I thoroughly enjoyed. We welcomed the neuromuscular experts from Alder Hey for an informative and interesting session on telemedicine and how to make the most of your virtual appointments.
We have more evening webinars scheduled, with others in the pipeline.
- 30.06.20 Living with Duchenne as an adult
- 06.07.20 Finding a job and working when you have a disability
- 14.07.20 Ask the expert – Neuromuscular Occupational Therapist
As always, please do let us know particular topics you’d like to hear about and we’ll work on creating the webinar!
COVID-19 shielding campaign
In May, we launched our COVID-19 campaign #weneedanswers with letters sent to the Prime Minister, Secretaries of State for Health, Education and Work and Pensions, as well as to the devolved administrations asking for answers and advice for those shielding.
I’m pleased to let you know that we received a number of responses, and have a meeting scheduled with the Cabinet Secretary for Health and Sport in Scotland. We will be discussing the shielding policy in Scotland and how it affects families living with Duchenne. This will be used by the government to help them understand what they need to consider when developing their shielding policy. Thanks to our Scottish Advocate, John Miller for shouting so loudly to mobilise the Scottish Government.
We are gathering questions and input from Duchenne families so that I can present them at this meeting. Please feel free to send them to lynnette@actionduchenne.org before the end of Monday 29 June 2020.
#ADCONF20
We have also started working on our amazing programme for this year’s conference. After discussions with experts across the country, and with our Duchenne families’ safety at the forefront of our minds, we decided to move the event to a fully online, virtual experience which will focus on 14 & 15 November. We will be using the latest technology and I’m really looking forward to sharing more details with you in the coming weeks.
Fundraisers
I’ve been delighted to see so many supporters take on challenges for us during lockdown, really showing that anything is possible! My highlights have been seeing a young person living with Duchenne create and sell masks, a Duchenne uncle running 100km and a virtual 80s quiz night to name but a few.
This month, we launched the appeal for the ‘Duchenne Science on Tour 2’ project, calling on our community and supporters to help us achieve our £10,000 total. I was privileged to attend one of the first ‘Science on Tour’ pilot events, meeting some wonderful families and healthcare professionals in Luton. It truly was a vital session and I urge you to get behind this appeal by sharing with your friends and family. Please use #StrongerCommunities and #AvivaCommunityFundUK and share this link https://www.avivacommunityfund.co.uk/duchenne to help amplify our message online.
We’re working hard to generate more funds to make up the shortfall that we’re experiencing. We want to bring back our furloughed staff and bring our exciting plans to reality. We are committed to you, our Duchenne community and we are committed to funding research, education, support and campaign projects to benefit our entire Duchenne community here in the UK.
Thank you all for your continued support and strength. Please keep safe and well.
Florence and the Action Duchenne team
Scottish Powerchair Football Association cheque presentation
