Bedrock mark International Batten Disease Awareness Day 2022 with Noah's Story

Today is International Batten Disease Awareness Day 2022, the goal of which is to honour and support those affected by Batten Disease and raise awareness.

In February this year, Bedrock Healthcare Communications made a film, Noah’s Story, about CLN2 Batten Disease to mark Rare Disease Day 2022. We are re-sharing it today as we did then - to help raise awareness, start conversations and drive change.

Batten Disease is a group of fatal genetic disorders. There are 13 types. 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. Most forms of Batten disease usually begin during childhood and eventually, children with Batten disease become blind, wheelchair bound, bedridden, unable to communicate and lose all cognitive functions. There is no cure for these disorders but a treatment for CLN2 disease has been approved.

Our film tells the story of 11-year-old Noah VanHoutan and his family’s journey with CLN2 Batten Disease. Made with the co-operation of the VanHoutan family, it’s a powerful and inspiring story of how they searched for answers.

Emily Wigginton, Bedrock’s Head of Client Services, explains the inspiration behind the film… “In my curiosity to learn more about different rare diseases I found the website Noah’s Hope – Hope4Bridget and the story that the VanHoutan’s share about their family’s journey with CLN2 Batten Disease. It really moved me, and I felt compelled to use our voice to help raise awareness, start conversations and help drive change. The VanHoutans and the families they put me in touch with are truly inspirational and I know how much it means to them that we shine a light on Batten Disease and help bring more awareness to the public about rare disease. I’m very grateful to them all for trusting us with their stories.”

Noah’s Story is available to watch on the Bedrock website. At just 4 minutes long, it gives an insight into their real lived experience.

Watch it here:  https://bedrock-health.com/