Key Partners

We’re so grateful for the support of our key partners, we couldn’t help so many people without them. If you could partner with us, please get in contact today.

Alex - The Leukodystrophy Charity

Global’s Make Some Noise

Global’s Make Some Noise is a national charity that supports small charities that look after some of the most vulnerable in our communities. Supported by Global, the  media and entertainment group is passionate about giving back to the communities to which it belongs. Global does so by supporting Make Some Noise as part of their Corporate Social Responsibility plan.

The National Lottery Community Fund

The National Lottery Community Fund have been a regular supporter of our work since 2006. During 2020 they generously supported our core costs and our first ever Digital Community Weekend event.

Pears Foundation Grant

As part of Government’s £750m charities package we welcome the support of  the Pears Foundation.

The Funding is granted through Pears Foundation’s trusted, long-term Partners to ensure funding gets to frontline organisations and their communities.


@PearsFoundation and @DCMS

bluebird bio

bluebird bio™ are a pharmaceutical company developing gene therapy for patients unable to have a traditional bone marrow transplant. This exciting breakthrough means boys who cannot be matched for a suitable donor now have access to this life saving treatment. They provide annual funding for our support and awareness raising work and have been instrumental in our assays to introduce new born screening for adrenoleukodystrophy (ALD) to the UK. We are very grateful to them for funding this website.

related links :

Garfield Weston Foundation

The Garfield Weston Foundation is a family-founded, charitable grant-making foundation, which supports a wide range of causes across the UK, donating over £80 million annually.

Almost 2000 charities across the UK benefit each year from grants made by the Foundation, ranging from small community and volunteer projects to large national organisations. Despite this range, the common theme is that charities demonstrate they are meeting a need effectively with clear outcomes and benefits, good leadership, sensible business plans and a commitment to excellence.

Thanks to the Garfield Weston Foundation we have been awarded a grant to expand our beneficiary support and engagement activities for Alex TLC.

Postcode Neighbourhood Trust

Postcode Neighbourhood trust, fund our Digital Support and Engagement. Postcode Community Trust is a grant-giving charity, funded entirely by players of People’s Postcode Lottery. Since launching in 2005 players of the lottery have raised hundreds of millions of pounds for thousands of organisations across Britain and internationally. By providing financial support for charities and good causes, Postcode Community Trust helps communities improve health and wellbeing, reduce isolation and undertake arts and physical recreation activities

Minoryx Therapeutics

Minoryx is a clinical stage biotech company leading the development of new therapies for X-ALD. They regularly provide funding for our support and awareness raising work.


DG3 is a leading global provider of print and communications services. They generously provide free print and design services and have been a key supporter since the charity was founded.

Genetic Alliance UK

The Genetic Alliance is an umbrella organisation for genetic and rare diseases. A key focus is political campaigning for sufferers of genetic and rare disease, and they are responsible for the development of the UK Strategy for Rare Diseases in England and work towards implementation within the NHS.
They are an important ally in our work CEO, Sara, is also a Trustee on their Board.

Metabolic Support UK

Metabolic Support UK is an umbrella group for patients with metabolic disorders and their families. They provide family and community services, advocacy and awareness, information and support for research.