Following the success of last years #walkingforstevie, Energise Energy Solutions are teaming up with Stevie’s friends and family to raise money for the Batten Disease Family Association (BDFA).
What is Batten Disease
Batten disease is a group of fatal genetic disorders. The disorder affects the body’s ability to get rid of cellular waste (lipids and proteins), so they build up in cells all over the body. The buildup causes seizures, vision loss, problems with thinking and movement, and eventually, death. There is sadly no cure for Batten disease at this moment in time.
Paul Taylor is a close friend of the company, sadly in 2018 his daughter, Stevie, was diagnosed with CLN3 Batten disease, aged just 12 years old.
As a result her life has become a lot more challenging in a number of ways and now requires a lot of support to allow her to have the best quality of life possible.
This Years Challenge
Organised by Stevie’s dad, Paul, the plan is for a large group of Stevie’s friends and family to cycle 17km through snowdonia national park, climbing Mount Snowdon and then kayaking 4km back to base.
Paul Taylor said:
“Last year’s fundraiser was a massive success and has made almost all the adaptations at the bungalow possible. We were totally overwhelmed by the support of our community and everyone at Energise and not sure we could have done this without you.
Our main focus this year is to give something back to the BDFA for their ongoing support and hopefully help other families that don’t have as much support as what we have received but also some members of the group want to raise specifically for Stevie so any funds raised directly for her will be used to tick things off her bucket list and and hopefully make some amazing memories!”
Batten Disease Awareness Day 2023
Just as we did last year, Energise will encourage our employees to wear orange again on the 9th June to help raise awareness for Batten Disease Awareness Day.
We will also be supporting the 5k challenge by walking or running 5k and donating towards the BDFA.
Walking for Stevie 2022
Last year Energise Energy Solutions took part in ‘Walking for Stevie’, which involved completing the Yorkshire three peaks challenge. The challenge was a huge success with over £15,000 being raised to help convert their bungalow into being more accessible for Stevie. The renovations included level access flooring, accessible kitchen, a sensory room, and other adaptations to make Stevie’s home a safe family home.
Batten Disease Family Association
The Batten Disease Family Association (BDFA) is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten disease. They are based in London but work with children, young people, families and professionals across the UK.
Using money raised through fundraisers such as Walking for Stevie, the BDFA will continue to optimise the support it gives affected families and related health professionals. They also plan to actively increase the awareness of Batten disease, contributing to national decisions on management of the disease and continue to facilitate UK and worldwide clinical and research developments.
You can learn more about the fantastic work the BDFA do here.
How to Donate
This year we’re raising money for both the Batten Disease Family Association and Stevie herself. If you wish to donate to the BDFA please click here, or to donate to Stevie and her family click here.
You can keep up to date with Stevie and the challenge by give their page a follow on Facebook here