First Batten Disease Awareness Day a Milestone to Unite Global Community, Increase Knowledge

The inaugural International Batten Disease Awareness Day was launched on June 9 under the theme “Come Together.” It became a milestone to increase the global reach of social media and unite members of the Batten disease community, while building awareness about the disease and the need for clinical research.

The initiative was organized by the Batten Disease Support and Research Association (BDSRA) and the Batten Disease Family Association (BDFA).

The BDSRA was founded by parents seeking to build a network for those diagnosed with Batten disease. Today, the association is a support and research organization dedicated to Batten disease in North America.

The BDFA offers informed guidance and support to families in the U.K. and to the professionals who work with them.

“Due to its rarity, unless you know someone with a connection to Batten, you will never hear about it. However, by bringing the international community together, we hope to raise awareness of this devastating disease which translates to earlier diagnosis and intervention,” Margie Frazier, executive director of the BDSRA, said in a press release.

“Today marks the beginning of an inspiring tradition that will amplify the voice of the NCL community, honor the lives of those that have been impacted, and drive donations to support research,” added Samantha Barber, chief executive of the BDFA.

Participants in the inaugural awareness day were asked to show their support in different ways, including following the campaign’s Facebook page; joining the #BattenDay2018 Twibbon campaign; modifying their Facebook profile picture; and participating in an art project called #MakeYourMark, where participants shared thumbprint art on social media to create a tangible and creative representation of the prevalence of Batten disease worldwide.

Earlier this year on Feb. 28, several global organizations came together for Rare Disease Day 2018 to raise awareness for the nearly 7,000 rare diseases known to date, including Batten disease.

More than 50 events were held in 32 U.S. states. The international day was hosted by the National Organization for Rare Disorders (NORD), the official U.S. sponsor, and by Paris-based EURORDIS, a nonprofit alliance of 792 rare disease patient organizations in 69 countries.