Batten Disease Awareness Day 2024

To celebrate Batten Disease Awareness Day 2024, we are wearing orange. Our family would like to show support to all families touched by this devastating disease. Particularly for the bravest, most amazing, and most resilient family, who entrusted me to share their story during the rare disease awareness initiative that I ran in February.

Amelia has really been really poorly recently, and her ability to keep smiling is totally inspiring; as is her family's ability to put one foot in front of the other every day, and still update us all on how their children are doing.

We salute you. Follow Amelia, and her brother Ollie, on their journey, and the amazing charitable activities they do to support families like theirs. Their work is tireless. The battle that they face very soon is to fight for continued access to the therapy that is crucial to slow the progression of their disease. A battle that no family should face, but is a familiar story in rare diseases.

Read their story here: https://www.bbc.com/news/uk-england-manchester-68726691

Batten Disease Awareness. Batten Disease Family Association Batten Disease Support & Research Association Australia

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