Join our team

The Lily Foundation is the UK’s leading charity supporting people affected by mitochondrial disease. We fund vital research, provide specialist information and support to patients and families and raise awareness of a complex and little-known condition.

Working at Lily means being part of a close‑knit, committed team driven by lived experience and a shared determination to create change. From accelerating research and championing patient voices to delivering compassionate support and fundraising to drive progress, everything we do is focused on improving outcomes – today and for the future.

Senior Public Fundraising Manager

Contract: Part-time (3 days per week)

Salary: £28,200 per annum, pro rata (based on FTE of £47,000)

Location: Remote (with occasional travel to meetings and events)

Application process: Please submit your CV and a covering letter outlining your interest in this role and how your skills and experience meet the person specification below. Please send to [email protected] by 21st August 2026.

Background

The Lily Foundation is the UK’s leading charity dedicated to advancing research, raising awareness and providing support for individuals and families affected by mitochondrial disease (mito). Our vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure.

We currently raise around £1m each year, with community fundraising, challenges and special events generating the majority of our income. With a new fundraising strategy in place, exciting plans for growth and increasing opportunities to engage supporters in different ways, we’re looking for someone to bring these programmes together into a joined-up public fundraising portfolio.

This is a fantastic opportunity to help shape the future of public fundraising at The Lily Foundation, building on our strong foundations while developing new ways to inspire supporters, grow income and maximise long-term engagement.

About the role

This is an exciting new role with responsibility for leading and developing Lily’s public fundraising programme, bringing together our sports events, special events, community fundraising and emerging individual giving activity.

Reporting to the COO, you’ll provide leadership across the public fundraising team, ensuring our programmes work together to deliver an outstanding supporter experience and sustainable income growth. You’ll line-manage three colleagues, helping them succeed in their roles while creating a joined-up approach to planning, delivery and stewardship across the portfolio.

Alongside overseeing one of Lily’s largest fundraising income streams, you’ll also play an important role in developing our Individual Giving, Regular Giving and Legacy fundraising activity, helping turn these emerging programmes into strong and sustainable sources of future income. If you’re someone who enjoys developing people, spotting opportunities and bringing different strands of fundraising together, this is a brilliant opportunity to make a lasting impact.

Key responsibilities

• Lead the delivery and ongoing development of Lily’s public fundraising programme, ensuring community fundraising, sports events, special events and individual giving activity work together to maximise income and supporter engagement.
• Line-manage, support and develop the two Events Managers and the Community & Individual Giving Officer, providing clear direction, regular feedback and development opportunities, and carrying out formal performance reviews.
• Work closely with the Head of Fundraising to translate Lily’s fundraising strategy into practical annual plans, priorities and targets for the public fundraising portfolio.
• Oversee the performance of the public fundraising programme, monitoring income, expenditure and KPIs, identifying trends and opportunities, and taking action where required.
• Support the continued development of Lily’s Individual Giving, Regular Giving and Legacy fundraising programmes, helping to test new ideas, improve supporter journeys and build long-term sustainable income.
• Ensure supporters receive an excellent experience across all public fundraising activity, developing joined-up stewardship journeys that encourage long-term support.
• Work collaboratively with Marketing colleagues to develop engaging fundraising campaigns, products and communications that inspire supporters to get involved.
• Encourage innovation and continuous improvement across the team, using insight, evaluation and supporter feedback to inform future activity.
• Ensure accurate use of the CRM system (Donorfy), promoting good data management and using reporting and insight to support decision-making.
• Prepare regular reports and updates for the Head of Fundraising and COO, highlighting progress, opportunities, risks and recommendations.
• Work collaboratively across Fundraising, Marketing and Operations to ensure public fundraising activity is well planned, well supported and aligned with organisational priorities.

Person specification

We’re looking for someone who combines strong people management skills with a genuine passion for supporter fundraising. You’ll enjoy helping others succeed, be comfortable balancing strategic thinking with practical problem-solving, and have the confidence to make decisions that improve performance across a busy fundraising portfolio.

Essential experience and skills

• Experience managing and developing a public fundraising portfolio, covering community fundraising, challenge events and/or individual giving.
• Experience line-managing and developing fundraising staff, creating a positive, supportive and high-performing team culture.
• Experience managing budgets, income targets and fundraising performance, using insight and evaluation to inform decisions.
• Experience developing supporter journeys and stewardship approaches that improve supporter experience and maximise long-term engagement.
• Experience contributing to the development and delivery of fundraising plans or strategies.
• Experience working with CRM systems to manage data, monitor performance and support decision-making.
• Strong organisational and project management skills, with the ability to manage multiple priorities and support others to do the same.
• Excellent communication and relationship-building skills, with the ability to work collaboratively across fundraising, marketing and operational teams.

Desirable

• Experience working within a health or medical research charity.
• Knowledge of fundraising best practice and the Fundraising Code of Practice.

Community & Individual Giving Officer

Contract: Part-time (3 days per week)

Salary: £21,000 per annum, pro rata (based on FTE of £35,000)

Location: Remote (with occasional travel to meetings and events)

Application process: Please submit your CV and a covering letter outlining your interest in this role and how your skills and experience meet the person specification below. Please send to [email protected] by 21st August 2026.

Background

The Lily Foundation is the UK’s leading charity dedicated to advancing research, raising awareness and providing support for individuals and families affected by mitochondrial disease (mito). Our vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure.

Community fundraising is at the heart of Lily’s success. Every year, hundreds of families, friends and local communities come together to raise funds in support of loved ones affected by mitochondrial disease. Alongside this, we’re beginning to grow our Individual Giving, Regular Giving and Legacy fundraising programmes, helping more people support Lily in ways that suit them.

As we continue to grow, we’re looking for someone who can build strong relationships with our supporters, help bring fundraising ideas to life and ensure everyone who chooses to support Lily has an outstanding experience.

About the role

This is a varied and rewarding role supporting the delivery of Lily’s community fundraising and individual giving programme. You’ll be the main point of contact for many of our amazing supporters, helping individuals, families and community groups make the most of their fundraising. You’ll also play a key role in developing Lily’s Teams initiative, which brings together families and friends fundraising in honour or memory of someone affected by mitochondrial disease.

Alongside community fundraising, you’ll support the delivery of Lily’s emerging Individual Giving, Regular Giving and Legacy fundraising activity, helping to develop and deliver supporter journeys, campaigns and communications that encourage long-term engagement.

Working closely with the Senior Public Fundraising Manager and colleagues across fundraising and marketing, you’ll play an important part in helping more people discover, support and stay connected with The Lily Foundation. If you’re someone who enjoys building relationships, getting things done and making supporters feel valued, we’d love to hear from you.

Key responsibilities

• Lead the day-to-day delivery of Lily’s community fundraising programme, supporting individuals, families and community groups to organise their own fundraising activities.
• Develop and grow Lily’s Teams initiative, supporting families and friends fundraising in honour or memory of someone affected by mitochondrial disease with sensitivity, empathy and excellent supporter care.
• Build strong relationships with community fundraisers, providing practical advice, encouragement and fundraising resources to help maximise income and supporter satisfaction.
• Support the planning and delivery of Lily’s community fundraising campaigns, appeals and fundraising products, working closely with colleagues across fundraising and marketing.
• Help develop and deliver supporter journeys for community fundraisers, regular givers and other supporters, encouraging long-term engagement and repeat support.
• Support the development of Lily’s Individual Giving, Regular Giving and Legacy fundraising activity through campaign delivery, stewardship and donor communications.
• Identify opportunities to grow community fundraising and Individual Giving income by encouraging repeat fundraising, in-memory giving, Regular Giving and other longer-term ways of supporting Lily.
• Maintain accurate records on the CRM system (Donorfy), ensuring supporter information is up to date and using data to monitor activity and improve performance.
• Prepare regular reports and updates for the Senior Public Fundraising Manager, identifying trends, opportunities and areas for improvement.
• Work collaboratively with colleagues across fundraising, marketing and operations to deliver joined-up campaigns, communications and supporter experiences.
• Represent The Lily Foundation professionally and enthusiastically, acting as an ambassador for the charity and building positive relationships with supporters and partners.

Person specification

We’re looking for someone who enjoys working with people and takes pride in delivering an excellent supporter experience. You’ll be organised, proactive and happy managing a variety of different activities, while always keeping supporters at the heart of what you do.

Essential experience and skills

• Experience working in community fundraising, individual giving or another supporter-facing fundraising role.
• Experience building and maintaining positive relationships with supporters or volunteers.
• Excellent communication skills, both written and verbal, with the ability to adapt your style to different audiences.
• Strong organisational skills, with the ability to manage multiple priorities and deliver work to a high standard.
• Experience planning or co-ordinating fundraising activities, campaigns or events.
• Experience using CRM systems to manage supporter data and monitor activity.
• A proactive, positive approach, with the confidence to work independently while contributing as part of a wider team.

• Good attention to detail and the ability to identify opportunities to improve supporter experience and fundraising performance.

Desirable

• Experience supporting Regular Giving, Individual Giving or Legacy fundraising.
• Experience working with people affected by serious illness, disability or bereavement.
• Knowledge of fundraising best practice and the Fundraising Code of Practice.

UK Mitochondrial Disease Research Institute

Expression of Interest: Theme Leads

Role title: Theme Lead, Scientific and Clinical Research Executive Board, UK Mitochondrial Disease Research Institute

Appointment type: Voluntary strategic leadership role

Application closes: 21st August 2026

Interviews: Tuesday 8th September 2026 (online via Teams)

Successful applicant will be asked to attend the first Board Meeting in London on 12th October

About the UK Mitochondrial Disease Research Institute

The Lily Foundation is working to establish the UK Mitochondrial Disease Research Institute (UKMDRI), a national, collaborative research institute designed to accelerate progress for everyone affected by mitochondrial disease.

Mitochondrial disease is complex, devastating and often life-limiting. Families affected by the condition urgently need better diagnosis, better care, better treatments and, ultimately, cures. The UK has world-leading clinical, scientific and research expertise in mitochondrial disease, but that expertise needs to be connected through a shared national structure with patients and families at its heart.

The UKMDRI will bring together clinicians, scientists, researchers, patients, families, charities and partner organisations to strengthen collaboration, reduce duplication, support clinical trial readiness and ensure that research is driven by the needs of those living with mitochondrial disease.

The Institute will be led by Professor Mike Hanna, Voluntary Scientific Director, with programme, governance and patient community support provided by The Lily Foundation.

We are now seeking outstanding senior leaders to join the Scientific and Clinical Research Executive Board, where they will lead one of the Institute’s five scientific themes and help shape the future of mitochondrial disease research in the UK. This is a unique opportunity to be part of a national strategic effort.

Scientific themes

The UKMDRI will be structured around five interconnected scientific themes.

Theme 1: National Clinical Registry

This theme will establish a co-ordinated national clinical registry for mitochondrial disease, building on existing expertise and initiatives such as MitoCohort. The registry will support better understanding of who is affected, how conditions change over time, what care patients receive and how services can be improved.

The theme will aim to link existing mitochondrial databases and patient cohorts under a single, secure governance framework, support clinical trial readiness, enable national reporting and provide a shared evidence base for research and healthcare planning.

Theme 2: National Mitochondrial Bioresource

This theme will co-ordinate access to well-characterised patient samples linked to reliable clinical information. Rather than creating a new biobank, the Institute will connect and harmonise existing collections across hospitals and universities under shared standards and governance.

The theme will develop a virtual national bioresource, making samples easier to identify and access for approved academic and industry research, while maintaining local ownership, patient trust and transparent oversight.

Theme 3: Disease Model Hub

This theme will connect UK laboratories developing models of mitochondrial disease, from cell systems to animal models. It will create a national catalogue of existing models, promote shared standards for validation and reproducibility and identify priority gaps for future model development.

The theme will support discovery science by enabling researchers to share tools, protocols and expertise, reduce duplication and strengthen collaboration across the UK and internationally.

Theme 4: Clinical Trial and Drug Discovery Platform

This theme will establish a co-ordinated national platform to support clinical trials, therapeutic development and drug discovery in mitochondrial disease. It will bring together clinical, data, academic and industry partners to improve trial readiness and accelerate translation from laboratory research to patient benefit.

A core element of the theme will be the responsible use of artificial intelligence, advanced analytics and secure data sharing to identify therapeutic targets, optimise trial design and support treatment development.

Theme 5: Building the Future Workforce

This theme will invest in the next generation of mitochondrial disease researchers, clinicians, research nurses and allied professionals. It will support clinical and non-clinical research training pathways, including PhD studentships, post-doctoral researchers, early-career fellowships, mentoring, mobility funding and networking.

The theme will help build a connected UK mitochondrial research community and support future leadership across discovery science, translational medicine, clinical care, trials and patient-centred research.

Choosing a theme

Applicants should indicate clearly in their Expression of Interest which theme they’re applying to lead.

Applicants may also note whether they would be willing to be considered for another theme if the selection panel feels their expertise is better aligned elsewhere.

About the role

Theme Leads will provide senior scientific, clinical or translational leadership for one of the Institute’s five research themes.

They will be UK-based, established leaders in mitochondrial disease, with the expertise, credibility, published research record and networks required to coordinate national activity.

Theme Leads will sit on the Executive Board and will play a central role in shaping scientific priorities, supporting delivery of the research roadmap, identifying opportunities for collaboration and ensuring that research activity remains ambitious, co-ordinated and patient-centred.

Key responsibilities

Theme Leads will be expected to:

• Provide senior leadership for one of the Institute’s five scientific themes
• Help shape the strategic direction, objectives and milestones for their theme
• Co-ordinate relevant NHS, academic, scientific and research partners
• Support national collaboration across mitochondrial disease research and care
• Identify opportunities for innovation, partnership and future funding
• Report theme-level progress, risks, opportunities and resource needs to the Executive Board
• Support the development of annual theme workplans and impact reporting
• Work closely with the Associate Theme Lead aligned to their theme
• Support and mentor future leaders in mitochondrial disease research
• Ensure that patient and family perspectives are considered within theme activity
• Contribute to the wider strategic leadership of the UKMDRI

Person specification

Theme Leads will be expected to demonstrate:

Essential criteria

• Evidence of expertise in mitochondrial disease research, mitochondrial clinical care or mitochondrial translational science
• Consultant appointment in NHS (including honorary academic consultants) or equivalent senior position in a non-clinical academic setting
• Track record of published research in mitochondrial disease
• Experience of leading collaborative research, clinical, translational and/or academic programmes
• Evidence of ability to co-ordinate activity across institutions, disciplines or professional networks
• Evidence of strong understanding of the UK mitochondrial disease research and/or clinical landscape
• Evidence of commitment to patient-centred research and meaningful mitochondrial patient community involvement
• Evidence of ability to contribute strategically to a national research institute
• Evidence of willingness to work collaboratively with other Theme Leads, Associate Theme Leads, The Lily Foundation and the wider mitochondrial disease community
• Experience of securing or contributing to major research funding

Desirable criteria

• Experience of national or international research leadership
• Involvement in one or more of the following: clinical trials, natural history studies, registry development, therapeutic development, diagnostics, genomics, myology, neurology, paediatrics, metabolic medicine, bioresources, disease modelling, workforce development or other mitochondrial disease research areas
• Experience of mentoring early-career researchers, clinicians or emerging leaders
• Experience of working with charities, patient organisations or lived-experience groups

Time commitment

The expected time commitment will vary throughout the year, but will include:

• Attendance at and preparation for Executive Board meetings, expected to take place quarterly
• Participation in theme-specific planning and reporting activity
• Preparation and review of relevant papers, workplans or progress updates
• Collaboration with the relevant Associate Theme Lead and Programme Manager
• Contribution to annual reporting and Institute-wide strategic planning

The role is intended to be proportionate and compatible with senior clinical, academic or research responsibilities, with up to 6 hours’ commitment per week.

Term of appointment

Theme Leads will be appointed for an initial term of three years, renewable once by agreement.

Appointments will be reviewed periodically to ensure that the role continues to meet the needs of the Institute and the relevant scientific theme.

The posts are non-remunerated, however reasonable expenses incurred in attending meetings will be paid, according to The Lily Foundation’s travel and subsistence policy.

How to apply

Please apply by submitting an Expression of Interest (EoI) and CV.

EoI instructions

• Please use the five headings below and follow the guidance for each.
• The page limit for the Expression of Interest is 4 pages (Arial 11 font): EoIs that exceed this may not be considered.

1. Scientific Theme (the Theme you are applying to lead); you can list more than one theme
2. Statement of relevant expertise against specific criteria above and motivation for applying. Please write your statement in lay person terms as shortlisted applications will be reviewed by a lay panel as part of the recruitment process
3. Summary of your published mitochondrial disease research publications (please state total number but discuss only the most relevant examples to fit within the page limit). Outline the actual impact or potential impact of your research
4. Summarise your leadership experience in mitochondrial disease
5. Short description of how you would contribute to the development and delivery of the relevant theme or themes

CV instructions

• The page limit for your CV is 3 pages (Arial, 11 font), including references.

Applications should be submitted by Friday 21st August 2026 to [email protected]

Interviews will take place on 8th September 2026 (online via Teams).

Selection process

Selection will be based on expertise, leadership experience, evidence of published, impactful research in mitochondrial disease, ability to support national collaboration and commitment to patient-centred mitochondrial disease research.

Why this matters

This is an opportunity to help build a national research structure that is ambitious, collaborative and rooted in the needs of patients and families.

By joining the UKMDRI leadership structure, Theme Leads will help ensure that mitochondrial disease research in the UK is better connected, more visible, more patient-centred and better placed to deliver meaningful change.

Equality, diversity and inclusion

The UKMDRI is committed to building an inclusive leadership structure that reflects the breadth of mitochondrial disease research, clinical care and lived experience across the UK. Applications are welcomed from all backgrounds, irrespective of race, colour, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age or veteran status. We actively encourage applications from under-represented groups. We also recognise that many people take career breaks; an unbroken career history is not a prerequisite for success.

Applications are encouraged from individuals across relevant disciplines, institutions, geographies and professional backgrounds.

Role title: Associate Theme Lead, Scientific and Clinical Research Executive Board, UK Mitochondrial Disease Research Institute

Appointment type: Voluntary leadership development and delivery role

Application closes: 21st August 2026

Interviews: Monday 14th September 2026 (online via Teams)

Successful applicant will be asked to attend the first Board Meeting in London on 12th October

About the role

Associate Theme Leads will support the Theme Leads and provide additional leadership capacity across the UKMDRI.

These roles are intended for individuals who are on a trajectory to leadership and research independence, and who have clear potential to become future national leaders in mitochondrial disease research, translational science or clinical care.

Associate Theme Leads should be UK-based. Clinical researcher applicants should be at consultant level. Non-clinical applicants should have evidence of team leadership and may hold lectureship positions and/or funding in their own name. The role is designed to support delivery of the Institute’s scientific themes while also providing a structured opportunity for future leaders to contribute to national strategy, develop leadership experience and build cross-sector collaborations.

Key responsibilities

Associate Theme Leads will be expected to:

• Support the relevant Theme Lead in delivering the theme’s objectives and milestones
• Contribute to theme-level planning, co-ordination and reporting
• Lead defined work packages, projects or cross-theme initiatives where appropriate
• Support collaboration across NHS, academic, research and charity partners
• Help identify risks, opportunities and resource needs within the theme
• Contribute to Executive Board discussions and decision-making
• Support patient-centred approaches to research design, delivery and communication
• Help strengthen links between researchers, clinicians, patients and families
• Develop leadership experience within a national mitochondrial disease research structure
• Contribute to succession planning and future leadership capacity within the field

Person specification

Associate Theme Leads will be expected to demonstrate:

Essential criteria

• Evidence of a trajectory to leadership and research independence, relevant to role. Clinical applicants should be at consultant level
• Expertise in mitochondrial disease, with relevant experience in one or more of the following areas: neurology, myology, metabolic medicine, genetics, paediatrics, translational science, clinical trials, diagnostics, data science, laboratory science, bioresource development, disease modelling or workforce development
• Evidence of published research in mitochondrial disease (as clinical, translational or scientific contribution to mitochondrial disease)
• Evidence of potential to become a future leader in mitochondrial disease research, clinical care or translational science
• Evidence of commitment to patient-centred research and meaningful mitochondrial patient community involvement
• Evidence of ability to contribute to collaborative work across disciplines, centres or institutions
• Evidence of willingness to work collaboratively with the relevant Theme Lead, Programme Manager and wider Executive Board

Desirable criteria

• Experience of leading or co-ordinating a defined project, work package, study or service development activity
• Involvement in one or more of the following: clinical research, translational research, therapeutic development, diagnostics, genomics, registries, natural history studies, bioresources, disease models, workforce development or patient-centred research
• Experience of working with multidisciplinary teams
• Interest in developing national leadership experience
• Experience of engaging with patient organisations, charities or public involvement groups

Time commitment

The expected time commitment will vary throughout the year, but will include:

• Attendance at and preparation for Scientific and Clinical Research Executive Board meetings, expected to take place quarterly
• Participation in relevant theme meetings and planning discussions
• Contribution to reporting, workplans and delivery updates
• Leadership of specific work packages or cross-theme activities where agreed
• Regular communication with the Theme Lead and Programme Manager

The role is intended to be proportionate and compatible with clinical, academic or research responsibilities, with around 3 hours’ commitment per week.

Term of appointment

Associate Theme Leads will be appointed for an initial term of three years, renewable once by agreement.

The role is intended to support delivery of the Institute’s scientific themes while helping to develop the next generation of mitochondrial disease leaders.

The posts are non-remunerated, however reasonable expenses incurred in attending meetings will be paid, according to The Lily Foundation’s travel and subsistence policy.

How to apply

Please apply by submitting an Expression of Interest (EoI) and Curriculum Vitae (CV).

EoI instructions

• Please use the 5 headings below and follow the guidance for each.
• The page limit for the Expression of Interest is 4 pages (Arial 11 font): EoIs that exceed this may not be considered.

1. Scientific Theme (the Theme you are interested in supporting); you can list more than one theme;
2. Statement of relevant expertise against specific criteria above and motivation for applying. Please write your statement in lay person terms as shortlisted applications will be reviewed by a lay panel as part of the recruitment process;
3. Summary of your published mitochondrial disease research publications (please state total number, but discuss only the most relevant examples to fit within the page limit). Outline the actual impact or potential impact of your research;
4. Current role and responsibilities, and any leadership experience gained to date in mitochondrial diseases;
5. Short description of how you would contribute to the development and delivery of the relevant theme or themes;

CV instructions

• The page limit for your CV is 3 pages (Arial, 11 font), including references.

Applications should be submitted by Friday 21st August 2026 to [email protected]

Interviews will take place via Teams on 14th September 2026 (online via Teams).

Selection process

Selection will be based on relevant mitochondrial disease experience, leadership potential, ability to support collaborative delivery, commitment to patient-centred mitochondrial disease research.

Why this matters

This is an opportunity to help build a national research structure that is ambitious, collaborative and rooted in the needs of patients and families.

By joining the UKMDRI leadership structure, Associate Theme Leads will help strengthen delivery across the Institute while developing the next generation of mitochondrial disease leadership in the UK.

Equality, diversity and inclusion

The UKMDRI is committed to supporting inclusive leadership development across mitochondrial disease research and care. Applications are welcomed from all backgrounds, irrespective of race, colour, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status. We actively encourage applications from under-represented groups. We also recognise that many people take career breaks; an unbroken career history is not a prerequisite for success.

Applications are encouraged from individuals across relevant disciplines, professional backgrounds, institutions and geographies, including those whose careers span clinical practice, research, translational science, diagnostics, data, laboratory science, workforce development or patient-centred work.