Running for a Reason: Marathoner Raises Awareness of ALD

Andrew will be taking on the Rob Burrow Leeds Marathon for a cause very close to his heart.

His six‑year‑old nephew was recently diagnosed with Adrenoleukodystrophy (ALD) – a rare, inherited condition that can only be treated effectively if detected before symptoms appear.

The condition was identified through the Generation Study, after their nephew’s younger brother underwent testing. As a result of that test, the family’s older child was also screened and diagnosed at an early stage – a discovery that has likely saved his life.

Thanks to this early detection, their nephew will now undergo a bone marrow transplant and will spend several weeks receiving treatment at Royal Manchester Children’s Hospital.

Andrew said:
“While this has been an incredibly difficult time for our family, we are so grateful that early screening made this possible.”

His nephew’s younger brother will also continue to be closely monitored, meaning that, if treatment is ever needed, it can begin straight away.

Leukodystrophies are a group of rare genetic disorders that mainly affect the white matter of the central nervous system – the brain and spinal cord. They can affect people of all ages and backgrounds, but are most commonly diagnosed in children.

These conditions are often degenerative and can cause symptoms including difficulties with movement, vision, speech and hearing, incontinence, and loss of cognitive skills. In many cases, this leads to a reduced or limited lifespan.

By sharing their story, Andrew hopes to raise awareness of ALD and highlight the life‑changing impact of early screening programmes like the Generation Study. The family are encouraging people to take part in such studies whenever they are offered the opportunity, knowing first‑hand the difference they can make.

To support Andrew in his fundraising mission, click here