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Alex TLC Support Services Impact Report 2025

Alex TLC reviews support for people affected by leukodystrophies and their families, with service data and beneficiary feedback. The report covers one-to-one support, community meetings, information resources and counselling from July 2024 to June 2025.

Report snapshot
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About

Alex, The Leukodystrophy Charity supports people affected by leukodystrophy conditions and their families.

Key Metrics

Counselling sessions delivered 171 counselling sessions were delivered to beneficiaries between July 2024 and June 2025.

Key Outcomes

  • Counselling clients showed positive movement on pre- and post-assessment measures of emotional wellbeing.

Geography

UK-Wide

Impact Snapshot
Key Metric 1
Total income £18,180,000 and total expenditure £18,560,000 (year ended 31 December 2024, charity no. 1084958 England/Wales and SC039654 Scotland); in 2024 spent £3.8m on...
Key Metric 2
700+ members supported through in-person visits and support calls in 2025; 697 support grants allocated in 2025 for essential items including specialist clothing, cooling...
Key Metric 3
Largest global investment in EB research to date: multi-million-pound drug repurposing trial provisionally agreed with LifeArc partner at Guy's and St Thomas' NHS Foundation...
£34,000 raised in 2025 winter appeal supporting families like Darcie's with specialist items, emotional support and research; 697 support grants delivered in 2025; first Members Connect event in Northern Ireland; EB Priorities Setting Partnership study completed providing global research roadmap
Impact Snapshot
Key Metric 1
22,507 households helped through RBL casework and specialist support services across 66 countries
Key Metric 2
22,600 grants given to those in need, totalling £11.8 million
Key Metric 3
733 beneficiaries represented at tribunals, resulting in £24.5 million in War Pensions awards
1,548 new families living with dementia supported by RBL Admiral Nurses service