I have returned to running following an injury so my son, Adam, decided to set me a challenge - run the Cambridge half marathon! He's also running but has height and youth on his side. Although completely out of my comfort zone distance wise, on March 8th 2026 I will be running around Cambridge to raise funds and awareness for the BDFA.

Batten disease is the umbrella name for a group of rare inherited disorders which affect mainly children. It causes a debilitating combination of dementia, epileptic seizures, motor decline, vision loss, profound disability and early death. Currently there is no cure and treatment is only palliative. Instead, families are left to mourn the child that was, and the adult that will never be.

The BDFA’s mission is to enable children and adults who are affected by Batten disease to live life to the full and to provide families with the care and support they need so that they do not walk this path alone. It offers informed guidance and support to families and the professionals who work with them, as well as actively raising awareness, and promoting research into the management of Batten disease to improve patient care pathways and ultimately find a cure.

In my capacity as Head of Scientific Affairs for the BDFA I know that every penny raised is vital to ensure we can continue to help the families and support ongoing work into the latest treatment strategies that aim to halt progression of the disease and improve quality of life for the children and their families. So please sponsor my endeavours.