- Remote working
- 21 hours per week
- 6 months contract
- £18-20k pro rata
- Lived experience of Duchenne desirable criteria
Action Duchenne knows that there is only one person who understands what a Duchenne parent is going through, and that is another Duchenne parent. The same applies to young people and adults living with Duchenne muscular dystrophy.
Overview
Focussing on the complete project life-cycle of a new, fully funded support projects, the Project Engagement & Support Coordinator will be responsible for all tasks involved in creating and growing groups for Duchenne Grandparents, Duchenne Parents/Caregivers, young people and adults living with Duchenne.
Benefits
We offer a competitive salary, completely flexible working hours, home-working and an innovative and supportive working environment.
About the support projects
Action Duchenne is a UK charity which provides life-changing support to children, young people and their families living with Duchenne muscular dystrophy. We are establishing at least four closed peer-to-peer support groups of young adults, parents/carers and grandparents living with Duchenne over the next 2 months.
These groups will offer support and training in life skills, a chance to take part in activities that would not usually be available to our young people and adults, and at the same time would provide parents/carers and grandparents with greater perceived empathy and respect that peer supporters are seen to have for the individuals they support.
The peer to peer support for all of these groups will have an immense effect on helping to navigate the increasing mental health issues and questions created during the lockdown period.
About the role
This is an opportunity for you to make a significant contribution within our small yet vital patient organisation. Responsible to and supported by the central Community Fundraising & Support Officer, the Project Engagement & Support Coordinator will;
- Receive training and full support in order to fulfill your role including; stewardship, recruiting for events, managing online meetings, how to engage and support Duchenne families
- Work closely with Project Marketing & Support Coordinator, volunteers and the central Action Duchenne team
- Build on the existing project proposal to create a clear and achievable plan to engage beneficiaries, execute the peer-to-peer support groups, build momentum and expand the project
- Delivery and execution of your project plan, such as writing and hosting group webinars, inviting and recruiting attendees, liaising with speakers and stakeholders, hosting the online events
- Working with the Project Marketing & Support Coordinatorto follow up, get feedback, recruit for focus groups for impact purposes
- Create a legacy plan for the support groups to continue after initial 6 month period, including researching and writing bids for continued funding
Candidate specification
Essential criteria;
- A strong commitment to the work of Action Duchenne
- Flexible approach to working methods and service delivery, and a willingness to learn new skills
- An interest in engaging stakeholders
- An understanding of the importance of supporting and empowering disabled people and their families
- Ability to work with a variety of groups e.g. Duchenne families and health and educational professionals
- Strong interpersonal and communication skills, demonstrating respect, empathy and positivity
- Diligent, methodical with exceptional attention to detail
- Good organisational skills
- The ability to work under pressure and to deadlines, managing and prioritising a demanding and diverse workload
- The ability to work in a transparent way, as part of a team
Desired criteria;
- Lived experience of Duchenne Muscular Dystrophy (ie as a person living with Duchenne, a parent/caregiver, sibling, or Grandparent)
- Experience in supporting people with disabilities
- Experience in working with teenagers and young adults
- Track record in igniting people’s interest in events, engaging stakeholders and making great things happen!
Why should you apply for the role of Project Engagement & Support Coordinator
Young people and adults living with Duchenne muscular dystrophy (DMD) face many challenges in their foreshortened lives. Some are extremely clinically vulnerable to COVID-19 because the condition reduces lung function and immune-suppressant drugs are used to slow disease progression. Young people, adults and families are in extended lockdown, even though inactivity can mean they suffer irreplaceable muscle-loss.
Parents with children and young people living with Duchenne are feeling not only the physical but also psychological pressure of lockdown. Home-schooling and the social isolation of being away from peers, friends and family is often compounded in children with Duchenne, since the prevalence of ADHM, ADD and Autism are comorbidities of the condition.
You can play a vital role in tackling social isolation and increasing mental well-being through getting Duchenne families involved in these vital support projects.
About us
Duchenne muscular dystrophy affects around 2,500 people in the UK, with the vast majority being male. Mutations, or changes, in the dystrophin gene stop the body making a vital muscle protein and over time this causes muscles to weaken and waste away.
The first signs of Duchenne happen in the early years of life and it is usually diagnosed around 4 years old. The condition reduces life expectancy to an average of approximately 30 years and it has no cure.
Action Duchenne has a simple vision: a world where lives are no longer limited by Duchenne muscular dystrophy.
We work to achieve our vision by:
- funding research to identify and advance potential therapeutic strategies for everybody living with Duchenne, and support clinical trials and the staff and infrastructure required to bring trials to the UK
- campaigning for the NHS to provide their patients with the earliest possible access to medicines that have been approved for the treatment of Duchenne
- lobbying Government agencies to improve care and services offered to those affected by Duchenne
- striving to create an inclusive society where everybody is equal, where disability is accepted and is no longer a barrier in accessing transport and other facilities
- building a community for all those affected by Duchenne – to bring people together to share their experiences and to raise the profile of the condition.
While we hope that research and clinical trials will one day lead to a treatment, or cure, for Duchenne, we believe it is vital to support families living with the condition today. We support families from diagnosis through their whole Duchenne journey.
The ideal candidate may have experience in the following; Project Management, Project Engagement, Project Support, Project Assistant, Delivery Support, Project Delivery Coordinator, Project Management Officer, Project Leader, Junior Project Manager, Community Coordinator, Engagement Coordinator
How to apply
Send us your CV and cover letter, explaining why you are the best candidate for Digital Marketing Coordinator. Successful applicants will be invited to attend a face to face interview via Zoom which will include a written task.
We appreciate your application and will only be contacting successful candidates, thank you for understanding.
