Organisation: Duchenne UK (DUK) Job Title: Director of Research and Development Term: Full time / permanent Reporting to: Chief Executive Officer and Founder Salary range: On Request Location: Hybrid-working set up Head Office: Duchenne UK offices, Shepherd’s Bush, London Our work We are an ambitious, dynamic and impactful charity. Following their sons’ diagnosis of Duchenne muscular dystrophy (DMD), Emily Reuben and Alex Johnson founded Duchenne UK in 2012. DMD is a devastating progressive condition diagnosed in early childhood which causes all the muscles in the body to gradually weaken. There is currently no cure for DMD, so Emily and Alex set up Duchenne UK to change this. Since 2012, we have raised around £30 million to end the devastating impact of DMD. We fund ground- breaking scientific research to find effective treatments, developing a first-class clinical research infrastructure to deliver DMD clinical trials in the UK. We engage industry and regulators to accelerate access to treatments, developing innovative assistive technologies to transform the lives of people living with DMD. We are here to support every family affected and ensure that they receive the best possible care. We aim not only to improve quality of live but stop the disease in its tracks. We need to do this at pace, because this generation of patients can’t wait. Alex and Emily were awarded OBEs in The King’s Birthday Honours List in 2023 in recognition of their services to charity and to people living with DMD. They, and the dedicated and effective team they have built at Duchenne UK, are now at the forefront of this work in the UK. Opportunity to join our team We have a new opportunity to join our team and build on these achievements. We are recruiting a Director of Research and Development (DoRD) who will be a key member of our team and play a central role in helping us achieve our mission. We are seeking a well-networked, highly motivated candidate who can lead and drive DUK’s R&D strategy. The successful candidate will identify and critically assess new R&D opportunities aligned to our vision to end DMD. The candidate will be accountable for the implementation of the R&D strategy, delivery of R&D programmes and projects, helping DUK to achieve its mission and strategic goals. The candidate must be driven and able to seek out new partnerships with academia, pharma, and other key relevant organizations in the UK and global life sciences ecosystem. To succeed in our mission, the successful candidate will need to think ambitiously and strategically about the development of new treatments and technologies for DMD, while supporting the infrastructure required to achieve the biggest impact from these new interventions for UK patients and families. This post is part of the senior leadership team at Duchenne UK and reports directly to the CEO and Founder and has responsibility for leading the Research and Development team, including the technology and data team. Job Description: Research and Development • Work with the Founders to develop and implement the charity’s research and development • strategy. Identify new drug targets and therapeutic approaches that exhibit potential to transform the treatment of Duchenne muscular dystrophy, and drug development. • Design, implement and manage the governance framework for research and development, seeking advice and updating advisory boards (namely the Scientific Advisory Board, and Technology Advisory Board, via the Head of Technology and the Data Advisory Board via the Head of Patient Data) and the Board of Trustees. • Responsible for due diligence and relevant operational delivery processes, from scoping to project, programme delivery and evaluation. • Accountable for DUK’s technology and data development strategy, including the development, launch and long-term delivery of the DUK data platform, and working with the CEO and Board of Trustees on commercialisation preparedness. • Accountable for DUK’s strategic partnership with the John Walton Muscular Dystrophy Research Centre at Newcastle University, managing the DMD Hub Manager to deliver the DMD Hub programme, to ensure the aims, objectives and outputs of the programme are aligned to DUK’s vision for clinical research and access to treatments. • Active participant in relevant programme governance bodies. • Partner with the Director of Income Generation to develop appropriate income strategies and budgeting, and support as relevant on funding applications. • Partner with the Director of Finance to develop and maintain robust programme management processes and resources. • Seek and secure new partnerships with academia and pharma to develop treatments for DMD. • Oversee the work of the DUK’s Project Co-Ordinator to ensure multiple projects across pre- clinical and translational research stay on target and meet goals. • Provide scientific expertise, guidance and strategy to successfully bring programmes to Go/No Go decisions. • Participate in business development activities, using personal expertise to promote research with external collaborators. • Work closely with all stakeholders including research partners, scientists, clinicians, regulatory bodies and biotech/pharma companies. • Attend conferences and meetings, with occasional travel. Strategy • Provide strategic insight and vision both externally and internally as part of the Senior Leadership team. • Accountable for finance and operational controls of all projects, including budget, reporting and compliance. • Provide strategic insight and foresight to proactively identify and secure new opportunities. • Work alongside Founders to maximise Research and Development delivery and opportunities, provide reports and updates where required to the Board of Trustees. • Be an active member of the Risk and Compliance committee, ensuring management of risks to all research and development work. • Develop and nurture an ongoing interest and deep understanding of DUK’s work so that they can confidently and passionately convey the value and impact externally. Leadership • As part of the Senior Leadership team, work alongside colleagues to collaboratively reach DUK’s organisational objectives. • Be an inspiring ambassador for the vision of DUK and ensure it is reflected in the strategies, outputs and behaviour of the Research and Development team. • Create a Research and Development team which is ambitious and passionate about DUK, providing leadership, coaching and setting priorities and targets. • Build strong working relationships with DUK founders, members of the Board, strategic partners and colleagues at all levels, adopting and encouraging a collaborative working approach. • Provide line management to direct reports, (Head of Technology, Head of Patient Data, Project Co Ordinator) setting and monitoring individual performance objectives, KPIs while motivating the team to be innovative and professional in its thinking and delivery. • Ensure all staff receive consistent and motivating direction and feedback to enable them to work to the best of their ability. • Keep up to date market information and competitive intelligence in target sectors/markets, sharing this with senior leadership to shape future strategy. • Carrying out any other duties as required, which are consistent with the duties and responsibilities of the post. Person Specifications: Skills and experience needed: • MD or PhD, or equivalent • Ideally, an interest in DMD with knowledge of the causes, symptoms and potential targets for developing treatments. • Demonstrable understanding of clinical and/or translational development. • Effective engagement with, and influence of clinicians and researchers and other internal and external partners and collaborators. • Experience of developing and leading a high-performing team, including coordinating and managing projects and priorities, and supporting professional and personal development. • Flexible and pro-active attitude. • Free to travel. • Confident speaker. Desirable: • Commercial experience. • Knowledge of the charity sector. Key skills for the role: • Exceptional communicator, with the ability to engage a range of audiences, stakeholders, funders and partners. • Excellent organisational and planning skills, including programme, resource and performance management. • Attention to detail and record keeping. • Ability to design, develop and utilise appropriate methods and tools to support high quality research and to measure impact. • Proven people management skills, including developing and motivating direct reports, colleagues and consultants. • Ability to work under own initiative with a proactive approach to problem solving. • Self-motivated, flexible and enthusiastic team player who can also work independently contributing to the development of a positive, can-do culture. • Ability to work and deliver under pressure to tight deadlines. • Expertise in the review and critical appraisal of complex information, data and literature. • Contracting and finance management experience • Confidence and diplomacy when dealing with stakeholders with diverse levels of experience and seniority. • Proven skills in writing for and speaking to a range of audiences to ensure impact, and in using different channels and media. Working for Duchenne UK We are a friendly, energetic, and determined team. As we are led by two parents of boys who live with DMD, our team has a very strong feeling of contribution to our mission. We prioritise team building and wellness through an annual offsite Team Away Day and an annual offsite Wellness Day, alongside social activity throughout the year. We operate a hybrid working week, to balance our team-based culture with a positive home-life. In the summer months of July and August, staff benefit from ‘Summer Fridays’, allowing them half days on Fridays (pro rata’d for part time staff) to enjoy the long summer weekends. Sound like the job for you? We’d love to hear from you: Benefits • 25 days of annual leave + 8 days of public holidays (both pro rata) • Summer Fridays – half days on Fridays in July and August (pro rata) • Flexible working policy • Hybrid working • Standard Employer Pensions contributions after 3 months • Team wellness day and team away day • Training and development opportunities Terms and conditions The appointment is subject to satisfactory references and an initial six-month period of probation, during which performance will be regularly reviewed. Relevant training will be provided during induction as well as opportunities to develop your career through experience of different aspects of the charity’s work and working with colleagues on new initiatives. The organisation’s hybrid working policy is at the discretion of the line-manager during the first three months of employment, to support the induction process. Applying for this job Please send us a copy of your CV. In addition, please answer the following questions, with a maximum of 300 words per question. You can send us a short film with your answers if you prefer or let us know if you would like to give us this information in a different way. 1. 2. 3. 4. Please tell us why you would like to work for DUK. In the job description, we have highlighted a range of experiences and skills we think we need. Please describe how you have demonstrated three of these. Please give us practical examples. It’s ok to use experiences from outside of paid work, including experiences you may have had in your personal life. If you think you have other qualities, we have not mentioned but which you think suit this role, please let us know. We want to know some of the things you have done and the experiences you’ve had, and what you think they have taught you. Tell us one thing that really excites you about this role. If you would like to discuss the role, please contact recruitment@duchenneuk.org Please email your applications to recruitment@duchenneuk.org Timetable Deadline for applications 1st Round interview 2nd Round Interview Decision made & successful candidate notified 23.00 Sunday 11th May Week commencing 2th May Week commencing 19th May 23rd May