A message from our National Director, Florence Boulton
Another year has flown by! A very Happy New Year to all my colleagues, partners, families and the whole Duchenne community; thank you for having Action Duchenne alongside you this year.
I hope that 2022 brings you 12 months of success, 52 weeks of laughter, 365 days of happiness…
As this new year starts to unfold, I would like to ask you to take a moment to look back at some of our favourite moments from 2021, and to extend a note of huge gratitude for your unswerving dedication to Action Duchenne.
Action Duchenne’s 2021 journey
The year 2021 was full of ups and downs for the global Duchenne community, as the pandemic continued. As a charity, we have successfully navigated through the pandemic. Our growth is a cumulative outcome of the efforts of each team member, partner, family and organisation involved with Action Duchenne.
There have been many individual factors and milestone events which have contributed to Action Duchenne’s increased stability and performance in 2021;
Strategy 2021-2024
With the global pandemic still dominating 2021, people stayed at home and got closer to their families. Many new relationships were developed, and most important of all, people learned many new skills in the confines of their homes. As a charity, we recognised this as an opportune time to solidify our services to the community and launched our Action Duchenne Strategy 2021-2024: Rebuild Refocus and Reinvent. We introduced this plan to reinforce our priorities, guide our longer-term ambitions and help to establish a strategy roadmap for 2021-2024.
Conference 2021
Following our first fully virtual Conference in November 2020, we learned what worked well, what we needed to improve upon and how we could deliver a world-class experience for our international community. Building on this event was a real success! The use of mixed panels (parents, people living with Duchenne, clinicians, experts, and the ability to ‘dial-in’) for each of the themed sessions resulted in inclusive, insightful and balanced content that was accessible for everyone.
We had a real focus on the social side of the event, and it worked extremely well – from The Meeting Place to the adult socials with the Paralympians, families felt included and a true part of the Duchenne community.
Community fundraising events
Following the decimation of 2020’s fundraising events, our wonderful supporters made 2021 a fantastic year for fundraising. Not only did the Royal Parks Half and Great North Run participants smash their targets by over 200%, and despite drop outs due to injury, our London Marathon runners also hit 200% of their fundraising target.
Community fundraising has been equally amazing this year, with hundreds of people organising and taking part in more than 30 events for us. My personal highlight was accompanying Deborah O’Doherty and her family in Derry as Dr Gavin McAteer and his crew crossed the line in his six day Mizen to Malin Head challenge; a truly humbling experience.
‘Peer-to-Peer Support’ project funded by Pears
The importance of the work we do in ‘helping others to help others’ was recognised in the form of funding by the Pears Foundation and Contact. This grant enabled us to continue our targeted webinars and online events, continue growing our Mums, Dads and Grandparents groups and launch the ‘Music & Me’ podcasts.
‘Transitioning into Adulthood, Fact-finding’ project funded by Delemza – delivered
Demelza Hospice chose Action Duchenne to conduct their fact-finding project around transitioning into adulthood. We held focus groups, interviews and conducted surveys to gather information and data from young people, families, clinics, and hospices. We have discovered some fascinating outcomes from this fact-finding mission, and will not only be publishing the report soon, but we will be acting on the findings to help us work with our partners to improve the support for young people living with Duchenne and their families who are going through the transition process.
Our highlight – The Lottery-backed ‘All-through Support’ project
Soon after I joined Action Duchenne, nearly two years ago, we were plunged into lock-down. As a charity, we were able to turn on a sixpence and answered the Duchenne community’s call for help; we saw a staggering 40,000 unique pageviews on our advice for Duchenne families about Coronavirus, our Support Officers spoke personally to, and gave support to over 2,000 families in the first 6 months of lock-down, we held 32 support webinars which provided vital information and help to hundreds of families, professionals and most importantly people living with Duchenne.
We firmly stood our ground against Coronavirus and became the backbone of the Duchenne community during our most challenging year. Many of our families have experienced loss over lock-down, including making the impossible decision to stay home and stay safe, risking their child or young person’s mobility. As a result, many of our young people have come off their feet permanently during the period of inactivity. It is a choice no one should have to face, but our community has, and we have supported them through the entire process.
During this time, we have upskilled our team further; enlisting the help of a trained Counsellor to coach the Support Officers to help them better serve our families. We have grown our volunteer base to nearly 20, enabling us to achieve more, engage more fully with our community, and utilise more expertise.
Then we received our first grant from the National Lottery. This was in recognition of the world-class support we had provided to the Duchenne community, and we were able to continue our work for a further 6 months.
Over this time, we received financial support from partners who all recognised the power of our work and wished to help us deliver.
This gave us time and space to not only create and deliver the projects, but also to find out exactly what is missing and what is truly needed to help support our Duchenne community;
- We established that there was little or no support for newly diagnosed families, unless they reach out for help.
- After receiving feedback from the Science on Tour pilot events, we know there is little or no help for families in making informed decisions around their child or young person’s care.
- We also know how important it is for families to have solid, experienced people supporting them, who understand the unique challenges they experience on their Duchenne journey.
- Through our survey work with Demelza, we have discovered so much about young people and adults living with Duchenne, and know precisely now that what is currently on offer for them through the NHS and other organisations is not what they need.
- Supporting people at their end of life and for families through bereavement is quite literally not even touched upon in the Duchenne community.
Our ‘All-through Support’ project aims to tackle each of these issues. Over the next two years, we will continue, create and deliver projects which will completely change the way Duchenne families receive support, bringing our world-class support to as many people as need it.
Action Duchenne’s plans for 2022
As we are now building on the strength of our technical capabilities and capitalising on the improvements we have made in 2021, with your support, we step into 2022 with many new aspirations and high expectations.
‘All-through Support’ project
This project is ambitious, but we know we are best placed to deliver this to the Duchenne community.
We will do this by;
- Employing a specialist to support newly diagnosed families from day one of their diagnosis. We will work with clinics to make the referral process streamlined and provide assistance to their teams.
- We will help families make informed decisions through delivering interactive science education workshops to young people, adults and their parents.
- We will set up localised peer-to-peer support networks and work with the National Counselling Society to provide families with a course of counselling sessions.
- Building on the success of the National Lottery-funded Takin’ Charge project, we will offer transition support and skills training to young people living with Duchenne.
- We will work with clinicians and hospices to create support materials for grieving families, and we will create peer-to-peer systems and regional support groups for these families.
Research strategy
Since launching our second Duchenne specific research strategy in 2017, the progress in Duchenne research has meant we have continued to adapt our strategy to take advantage of new opportunities and overcome any hurdles. Over the forthcoming months, we will be re-establishing our research strategy to include;
- Launching the new UK DMD Registry; we have strategically invested in both the capacity that underpins the UK DMD Registry and the database itself.
- ‘The Big Ideas Fund’; a restricted fundraising campaign where 100% of money raised goes towards research ideas. Scientists are given the chance to develop their early ideas which could turn into a big breakthrough but that would usually be overlooked due to lack of finance.
- Communicating research updates; we will be publishing end of project reports, FQA and regular research project updates.
Our aim is to make our research and investments more transparent and understandable for Duchenne families and their supporters.
Membership
Our members play an important role in our charity, with their regular donations enabling us to plan long term, achieve our vision and undertake projects on a larger scale than we could otherwise do. Although our Membership is steadily growing, we have ambitious goals and are focussed on expanding the number of regular donors by a significant amount. This is where you can take an active role in our organisation. Please set up a monthly direct debit using this form, and help us carve the future.
Events
Our team has an action-packed diary of events throughout 2022, from virtual fundraising ideas, to in-person challenge events. There is something for everyone, and we always welcome people’s own fundraising ideas! When it comes to fundraising, the world is your oyster. If you’d like to chat through some ideas, or to take part in an event please email info@actionduchenne.org and we’ll welcome you with open arms.
I thank all of you for your support in the year 2021. As the National Director of Action Duchenne, 2021 brought a lot of opportunities for our progress; and the credit goes to our dedicated team of innovative and creative people and our invaluable supporters. I look forward to continuing to exceed our Key Performance Indicators throughout the following years, and to steering our charity to continue to steadily grow in the long term. We will continue to expand our team and as a result, you can expect to see new talented experts, specialists and innovative minds coming into the Duchenne community in 2022 and beyond.
Best wishes,
Florence
Long-standing Trustee launches charity album
