Alex, The Leukodystrophy Charity (Alex TLC)

Alex TLC is looking to recruit a Part-Time Trusts and Grants Fundraiser to join our small fundraising team and lead on our trust fundraising.

Job Title: Trusts and Grants Fundraiser

Reporting to: Fundraising Manager

Hours: 21 hours per week

Salary: £30,000 (pro rata)

Contract term: Permanent (3-month probationary period)

Annual Leave: 28 days including bank holidays FTE (pro rata)

About Alex TLC

Established in 2004, Alex, The Leukodystrophy Charity (Alex TLC) was founded by a mother whose sons, Alex and Ayden, had both been diagnosed with leukodystrophy. She recognised the severe lack of information and support available to families in her position and wanted to make sure that no one had to face leukodystrophy alone.

Alex before diagnosis

Alex after diagnosis

In a relatively short amount of time, and with very limited resources, Alex TLC have become an internationally recognised centre of excellence for anyone affected by leukodystrophy. We are the only charity in the UK that provides invaluable support for everyone with leukodystrophy, their families, and carers.

What is leukodystrophy?

Leukodystrophies are rare genetic disorders primarily affecting the white matter of the central nervous system (i.e., the brain or spinal cord). They affect males and females of all ages and backgrounds, most notably children.

The majority of leukodystrophies are degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills. In many cases, this sadly means a reduced or limited lifespan.

There are over 100 known types of leukodystrophy identified to date, including some so rare they only affect one or two individuals.

“First class organisation, with staff who fully appreciate the problems of leukodystrophy. The ONLY organisation out there to help” Alex TLC Impact Survey

About the role

This is an exciting opportunity for an experienced Trusts and Grants Fundraiser, or an excellent writer and storyteller, who is looking to progress their career within the third sector.

The Trusts and Grants Fundraiser will join our small fundraising team, working under the management of the Fundraising Manager, to secure funding to support core support services, existing and new projects.

Working with the CEO and support service staff to understand the impact of Alex TLC’s activities, the Trusts and Grants Fundraiser will develop long-term fundraising relationships with significant funders, and research new potential funders.

Main responsibilities

• Work with the CEO and support team to understand project funding requirements and impact

• Identify new opportunities and create a robust pipeline of funding opportunities

• Develop high-quality funding proposals to secure income for core income and project work

• Submit high-quality grant applications, in line with budget requirements

• Manage and steward relationships with existing and new trusts and foundations

• Produce high-quality funder reports, ensuring all requirements and deadlines are met.

• Update the CRM system to ensure activities, communications, donations and other important details are accurately recorded and maintained.

• Plan and manage own workload

Additional responsibilities

• To assist any member of the Alex TLC team outside the scope of your post, where reasonable

• To work as a member of our small, dedicated team

• To uphold the values and ethos of the charity

• To become familiar with the basic aspects of leukodystrophies and the challenges faced by our beneficiaries

Benefits

Flexible working

Opportunities to attend Alex TLC events

• Be a part of an award-winning and innovative grassroots charity

Location

The role is part-time and home-based for 21 hours per week. Working patterns will be agreed upon appointment.

This successful candidate must have the right to work in the UK and will be expected to come to the office, or nearby meeting space, for quarterly face-to-face meetings, expenses for which will be paid. The office location is Alex TLC Charity Shop, 45 Peckham High Street, London SE15 5EB.

Person Specification

You don’t need any formal qualifications for this role; what’s important are the skills, passion and experience you bring.

Essential Criteria:

• Experience in prospect research and pipeline management

• Ability to write clear and concise funding bids and reports to trusts and foundations

• Ability to understand operational information and transform it into digestible proposals and communications for key stakeholders

• Ability to communicate effectively and professionally with a wide range of individuals, such as internal colleagues, beneficiaries, external collaborators, stakeholders, and donors

• Ability to work in collaboration with key staff members

• Ability to work under pressure and to deadlines

Excellent IT skills including MS Office and Google Drive

• Knowledge of GDPR principles within fundraising

Desirable Criteria:

• A minimum of 2 years’ working in the fundraising sector and meeting financial targets

• A minimum of 2 years’ experience in successfully securing income (including multi-year gifts) from trusts and foundations

• Persuasive interpersonal and negotiation skills

• Understanding of the fundraising challenges faced by small charities in the current climate

Experience using eTapestry or other CRM system

• Knowledge of the rare disease landscape

Application instructions

The closing date for this role is 31st May 2026.

To apply, please send your CV and a supporting statement which explains what attracts you to this role and demonstrates how you meet the person specification to marlene@alextlc.org.

We welcome questions and would be happy to arrange an informal chat about the role.