Last Month, June 9th, marked the inaugural International Batten Disease Awareness Day. Themed “Come Together,” this important milestone aims to leverage the global reach of social media to unite members of the Batten disease community, while building awareness of this disease and the need for research.
Batten disease, or Neuronal Ceroid Lipofuscinosis (NCL), is an inherited disorder of the nervous system that typically begins in childhood. To date, there are 13 genes that have been linked to the different forms of NCL. There are four primary types of Batten disease with the first symptoms presenting anywhere between 6 months to 15 years of age, depending on the child. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease will experience blindness and dementia. Batten disease is often fatal by the late teens or twenties, and in some forms it can be fatal between the ages of 8-12.
Participants in International Batten Disease Awareness Day were asked to show their support in several ways including: 1) Liking the campaign’s Facebook page (@InternationalBattenDay); 2) Joining the #BattenDay2018 Twibbon campaign; 3) Utilizing the Facebook profile frame; and 4) Participating in an art project called #MakeYourMark where participants are asked to share thumbprint art on social media to create a tangible and creative representation of the prevalence of Batten Disease and NCL around the world. More information can be found here on their fact sheet.
“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,” said Margie Frazier, Executive Director, Batten Disease Support and Research Association.
“Today marks beginning of an inspiring tradition that will amplify the voice of the NCL community, honour the lives of those that have been impacted, and drive donations to support research,” said Samantha Barber, Chief Executive, Batten Disease Family Association.