Be our business partner Introduce us to organisations and individuals who might be interested in supporting us
Explaining complex Duchenne research to our community
98%
of attendees gained understanding of Duchenne research
6
Offer employment opportunities to adults living with Duchenne
95%
found hands on experiments and activities a useful way to learn
30+ community events nationwide provide local support
professionals, teachers, young people 200+ families, living with Duchenne and their siblings educated
• working with the NHS to improve care and provide their patients with the earliest possible access to approved medicines
We will achieve our vision by:
Duchenne muscular dystrophy is a rare, disabling, muscle-wasting condition. Young people are usually diagnosed around four years old, and those living with the condition use a powered wheelchair in their teenage years and most will require a ventilator in their twenties. Average life expectancy is said to be around 30 years. There is no cure.
By increasing the number of supporters and partner organisations we engage with, we will meet our ambitious targets to increase the number of young people, adults and families who benefit from our support, education and research projects. We’re also working with an independent impact reviewer to gain a deeper understanding of the difference we are making. We know our work has impact. This will allow us to be more proactive in providing support and identifying unmet needs.
peer-to-peer support groups for mums, dads, grandparents and young people
What’s next?
What’s next?
24 local events across the UK in 2021
A website that provides easy access to relevant information and a place for families to tell their stories
£220k
2021/22
£245k
2022/23
TARGET NUMBER OF PARTNERS
Annual International Conference
Our future success will be defined by projects that reach across the UK and internationally to improve care; provide families with the knowledge, education and support they need throughout their Duchenne journey; and provide people living with Duchenne with opportunities to attend university, find a job and reach their full potential in society.
30+
700+
1,000s of online viewers of science education channel
95% rate the event as good/excellent
We’d like you to be a part of our success.
10s
bringing together families, researchers and 70+ Countries connections
Florence Boulton National Director
Actual
£195k
2020/21
Online support and science education
Gary Fegan Chairman
SPONSORSHIP TARGETS
support webinars this year
of online meet-ups arranged for Duchenne grandparents and parents during lockdown
registrants making it the biggest Duchenne event in Europe
What’s next?
What’s next?
A dedicated programme for young people, adults and their families living with Duchenne
Our 2021 conference will bring together more delegates from the global Duchenne community
2020/21
• helping to create an inclusive society where everybody is equal and disability is accepted.
Making a personal or leaving legacy gift Providing in-kind, pro bono support
Our 2021-2024 plan provides a clear roadmap for our future strategy and marks the beginning of a new and exciting chapter.
• funding research into potential therapeutic strategies for everybody living with Duchenne
Organising a workplace fundraising event
people, adults and their families given 2000+ young direct, bespoke, support
• supporting the Duchenne community – to bring people together to share experiences and learn from each other
• delivering projects that encourage the Duchenne community to use their passion, skills and experience to support, inspire, and empower each other • using our positive public image and messaging to engage business sponsors to fund our vital projects
Supporting families
2021/22
We work to achieve our vision by:
Action Duchenne is an independent registered charity led by a volunteer Board of Trustees. Our expertise is driven by the lived experience of our team: half of our staff and Trustees have a direct connection to Duchenne. We combine that experience with expertise from across the business, research and charity sectors to give us an unparalleled ability to deliver complex projects efficiently and successfully. We are truly experts in the Duchenne field.
SUPPORT US
2022/23
ACTION DUCHENNE HAS A CLEAR VISION: A WORLD WHERE LIVES ARE NO LONGER LIMITED BY DUCHENNE MUSCULAR DYSTROPHY.
OUR IMPACT, YOUR OPPORTUNITIES
2023/24
OUR STRATEGY
13 23 26 30
£280k
2023/24
IMPROVING LIVES SEARCHING FOR A
our Neil, Head of Research educating plex Duchenne families about the com science and care options
Day chenne Awareness Harry Hill @ World Du
Zac is a trustee an life sciences and tecd a solicitor specialising in hnology
Ravi one of our En gement and Support Officers, is developga ing support progra for other adults livi ng with Duchenne mmes
117 volunteers whos year Lizzie, one of the ted 2,100 hours thi na do ely tiv collec
THE BENEFITS OF WORKING WITH ACTION DUCHENNE
ter and one Jonny is a radio DJ and broadcas of our Ambassadors
Gemma, a devoted Duchenne mum and a business fundraising voluntee r
lego Harikat enjoying the get togethers
at one of our family
When an organisation chooses to support Action Duchenne, it is not just our families who benefit. You will raise the profile of your company with a national charity with an international reach. We are confident our objective of achieving a more inclusive society will be consistent with your own values. Peer to peer supp support event ort at a family
Tracey is dedicated Duchenne nan and a prolific fundraiser
itted to Director is commop Florence, National uc ng pe le, adults you ng ati ed d an supporting h Duchenne and families living wit
Victoria, one of our Engagement and Support Officers and a Duchenne mum, leads on our community events
Angela curates our UK DMD Registry and has advocated for families dealing with difficult situations for more than 10 years
Action Duchenne Conference welco2020 Annual International 70+ countries med 700+ registrants from
We offer your staff the opportunity to gain wider experience in the voluntary sector, including mentoring teenagers and young people living with Duchenne or providing those living with Duchenne much-needed work experience. We can give your staff the chance to work for a day with our team; they might support one of our events or even become an ambassador for the charity. You can also meet parents and siblings, whose unique perspective can play an important part in any dinners or other fundraising events you hold. Whatever type of partnership you would like, Action Duchenne will help you to meet your community and social responsibility targets. Whether you are looking to make a single donation, choose us as your charity of the year or have a longer-term relationship, we will support you to ensure that your organisation benefits.
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Our Duchenne Science on Tour roadshow helps families understand complex research
t e and their family me Michael, big sisterinEvour Grotto as tm ris Ch r Fathe
Tina is a trustee d has extensive experience in thean biotech and pharmac industries eutical
Sam, our Operations Manager and a Duchenne mum, supporting young adults at our Annual International conference
Run with us
John Miller, dedicated Grandad and our Scottish Advocate, created a fundraiser for us to celebrate his 82nd birthday
no ant who offers pro bo Fiona, a HR consult e? sam the do you uld Co expertise.
Mark is a trustee an d Duchenne dad wh supported Action Du chenne for nearly 15o has years
© Action Duchenne - Registered Charity No 1101971 / Scottish Charity No SC043853
da r support officers ans on Lynnette, one of oupp ilie fam er oth s ort Duchenne mum su rney their Duchenne jou
CURE