Batten disease organizations prepare for June 9 awareness day
Virtual 5K among events planned to raise funds
The global Batten disease community will come together Monday, June 9, to connect and spread awareness about the rare genetic disorder.
To mark International Batten Disease Awareness Day, the Batten Disease Support and Research Association (BDSRA) is planning a virtual 5K in hopes of raising $100,000 to help support families affected by Batten disease, promote research into understanding the disorder, and develop new treatments.
Registration for the event is available online. Supporters can download and print virtual racing bibs, personalize them, and share them on social media using the hashtag #BattenDay2025.
The BDSRA has also created a Batten Awareness Day toolkit featuring resources such as images and sample text that can be posted to social media and a template letter for requesting donations.
The organization will offer its usual support programs in June. These programs include twice-monthly virtual coffee chats for parents and caregivers of people with Batten disease to connect with each other, as well as once-monthly grief chats for parents who have lost children to Batten disease.
Lighting up orange in the UK
In the U.K., the Batten Disease Family Association (BDFA) is leading an effort to light up local buildings in orange, the color associated with Batten awareness, on June 9.
“This significant day brings us together with the global Batten community to shine a spotlight on Batten disease and turn the UK orange in support,” the organization says on its website.
The BDFA encourages community members to help fundraise and to share their stories on social media, tagging the organization using the handle @bdfabattendisease.
Batten disease, also known as neuronal ceroid lipofuscinosis, refers to a group of rare genetic disorders marked by neurological damage. Batten disease symptoms can include vision loss, seizures, problems with motor skills, and changes in personality and behavior. Most forms of Batten disease do not have any approved treatments that can alter the course of the disease.
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