Create lasting change for people with leukodystrophy
Significant donations from philanthropists like you are vital for our work, and can transform the lives of those affected by leukodystrophy.
No one should face leukodystrophy alone, and your support ensures that we can continue to improve emotional wellbeing, reduce isolation and strengthen resilience for anyone living with these rare, genetic, and often life-limiting conditions.
Our small team works closely with philanthropic donors to create long-lasting impact and help to work towards a world where nobody faces leukodystrophy alone, where every person feels informed and supported.
We also welcome grants from Donor-Advised Funds (DAFs), offering a flexible, tax-efficient way to support our work.
Why give to Alex TLC?
Philanthropic support enables Alex TLC to ensure that families affected by rare and devastating leukodystrophies receive the guidance, support, and community they need.
- A unique national charity
Alex TLC is the only UK charity dedicated to supporting people affected by all forms of leukodystrophy.
- A trusted patient voice
As the named patient group for the NHS England Inherited White Matter Disorders (IWMD) Patient Service and Registry, we attend clinics to support families and ensure the lived experience of patients and families help shape national care standards and improve outcomes.
- A cause that’s often overlooked
Leukodystrophies are rare, complex neurological diseases that receive little public attention or support.
- A small charity with significant impact
Alex TLC is a small specialist charity, meaning philanthropic support has a direct and visible impact.
- Direct support when people need it most
From the moment of diagnosis, Alex TLC provides trusted information, counselling, community connections, and practical help to those navigating life-changing conditions.
- Helping ensure no one faces leukodystrophy alone
Philanthropic investment allows Alex TLC to continue providing a vital lifeline to people living with these devastating conditions.
What we offer Philanthropists
- Dedicated support from a member of our team
- The choice to donate to our work in general or give to a specific activity, such as one-to-one support, counselling, research-based activities, or our Community Weekend
- Invitations to our key events
- Regular reporting on the impact of your donation
- Personal updates to bring you closer to the people you support, including photos, quotes, and insight from the people you’ve helped
- The chance to make a genuine difference in the lives of those affected by these devastating conditions
- Opportunities to involve your children and family with your philanthropy
Get in touch today to let us know what you’re interested in
How your gift could help
£1,500 could fund a regional face to face activity for up to 40 attendees to reduce isolation and improve emotional wellbeing
£4,000 could fund 1 month of our research activities, including stakeholder management and engagement, monthly research summaries, representation of patient voice to the NHS, research organisations, pharmaceutical companies and health decision makers such as NICE and the National Screening Committee.
£7,000 could fund one month of our awareness raising and campaigning activities, including website management, community communications, social media channels, invitations to present about our work and carer/patient experience, conference attendance, press and media opportunities.
£8,500 could cover the costs of one month of our support services including individual support, counselling, attendance at IWMD Service clinics, advocacy at appointments and professional meetings, our beneficiary Grant and Connecting Together programmes.
£30,000 could fund one month of our programmes of charitable activities including essential core costs, management and governance.
£115,000 could fund our annual Community Weekend and Science Day, including venue hire, accommodation, meals, entertainment, childcare, children’s activities, and workshops.
