The Batten Disease Family Association (BDFA) is holding a ‘13’ fundraising event for the international Batten disease awareness day on 9^th June. The number 13 was chosen to reflect the fact that there are 13 types of Batten disease and it is hoped that the overall campaign will raise £13k for the ongoing work of the BDFA. 

My part in the campaign will see me undergo a personal fitness challenge! 

Like many people I have found it hard to keep fit during lockdown. The Leeds to Liverpool canal which runs near to my home in Baildon, West Yorkshire, has given me the perfect route to challenge myself. On Saturday 5^th June, I will run/jog/walk for the 13 miles from my front door right into Leeds City Centre, wearing orange and raising awareness for Batten disease as I go.

My inspiration for this challenge are my niece and nephew, Ellie Mae and Caleb Brownnutt, who both had CLN2 Batten disease. Their own strength and resilience amazed us as a family and they continue to inspire me every day, especially in my role as Head of Fundraising for the BDFA. 

Batten disease is a neurodegenerative, terminal condition which causes profound disability in children and an early death. There is currently no cure for Batten disease. We lost Ellie Mae when she was just 6 years old and Caleb when he was 9.

The BDFA really is a lifeline to families affected by Batten disease and I want to raise as much as possible to ensure that the charity can continue to ‘be there’ for them on into the future. Please help me to strengthen the BDFA, to raise awareness of Batten disease and to remember two very special children. I am forever proud to be their Auntie Liz.