The Noah Jordan Foundation

The Noah Jordan Foundation was created in memory of Noah, whose story remains at the heart of everything the charity does. Noah was a bright, much-loved little boy whose life was tragically cut short by a rare and devastating paediatric mitochondrial disease, specifically PolG-related mitochondrial disorder (Alpers’ Syndrome), for which there are currently no treatments or cure.

When he died in March 2024, his father Ben made him a promise: that the impact they would have on these devastating diseases within his lifetime would be part of Noah’s legacy, and that he would not let him down. Noah’s story has since become a powerful catalyst for change, driving urgency in research and awareness across both the medical and wider community.

The Foundation’s mission is both urgent and wide reaching. They fund medical research with the aim of improving clinical management, developing treatments, and ultimately finding a cure for rare, terminal paediatric mitochondrial diseases, particularly though not exclusively PolG-related conditions such as Alpers’ Syndrome.

Alongside this, they work to raise awareness among both the public and healthcare professionals through education, training, and events. They also provide essential support to affected families, offering guidance, resources, services, and financial assistance during some of the most difficult circumstances imaginable. There are also a range of fundraising opportunities and events that individuals, teams, and organisations can get involved in throughout the year. 

We would be incredibly grateful for your support. If you would like to get involved, whether through fundraising, collaboration, or support, please do not hesitate to reach out.

Together, we can fight for a brighter future for other children affected by these devastating diseases as part of Noah’s legacy.