This month, The Sheffield 1000 are proud to donate £1000 towards life-changing treatment for Eliyas, a little boy from Sheffield living with an extremely rare genetic condition called TUBB4A-related leukodystrophy.

At just one year old, Eliyas was diagnosed with this devastating condition, which affects the development of myelin in the brain and impacts movement and neurological function. Everyday milestones that many children reach naturally require incredible strength and determination for Eliyas and his family.

TUBB4A-associated leukodystrophy can cause serious neurological difficulties, including seizures, muscle contractions, hearing and speech challenges, and loss of motor skills. Tragically, the condition is often life-limiting, and currently there is no cure.

However, there is hope in the form of a pioneering gene therapy programme in the United States that may help slow or alter the progression of the condition. Unfortunately, this treatment is not funded by the NHS, meaning families must raise significant funds themselves to access it.

Our donation will go directly towards helping Eliyas access this potentially life-changing treatment.
We’re honoured to support Eliyas and his family as they continue to fight for hope, treatment and a brighter future.