Jess's fundraiser for Alex, The Leukodystrophy Charity

Hi everyone,

As some of you know, in recent years many members of my family have been diagnosed with the rare genetic condition adrenoleukodystrophy (ALD). This includes my father, two uncles, myself, my three boys, and my cousins. It’s been a challenging journey, one that we’ve kept relatively private until now.

I’ve been given a special opportunity to make a difference by running the London Marathon on Sunday, 26 April 2026 and fundraising for Alex TLC – The UK’s Leukodystrophy Charity.

Why this matters

Leukodystrophies are rare genetic disorders that primarily affect the white matter of the brain and spinal cord. They can lead to loss of mobility, speech, vision, hearing, and cognitive skills, and in some cases can be life-limiting. These conditions affect people of all ages and backgrounds – often children – yet awareness and research remain limited.

How you can help

Every contribution, big or small, will make a real difference in supporting families affected by ALD and raising awareness of this condition.

Alex TLC has four key aims:

* Enable more patients, families and carers to access vital support and information

* Connect patients and families to others living with similar disorders

* Raise awareness and improve public and professional education through events and campaigns

* Advance medical research to find better treatments, enable early diagnosis and increase life expectancy