From participating in a virtual 5k to sharing personal stories, supporters are ready to mark International Batten Disease Awareness Day, observed annually on June 9.
The objective of this global event is to raise awareness among the general public as well as legislators, industry representatives, public authorities, researchers and health professionals.
Batten disease is a group of rare inherited neurological disorders believed to affect approximately 1 in 100,000 people worldwide. Awareness and education are key to recognizing, diagnosing, understanding and managing the disease.
For its part, the Batten Disease Support and Research Association (BDSRA) offers ways to support Batten patients and their families.
“Families, their advocates and supporters bring the message of hope and awareness of the disease to thousands of people and inspire charitable donations to the BDSRA,” the organization states on an Awareness Day webpage. . “Through social media campaigns, hometown fundraisers, school and church events, and awareness projects, volunteers explain their connection to Batten disease and the importance of raising funds for the support and research.”
The BDSRA celebrates Batten families again by presenting the Batten Virtual 5K International Disease Awareness Day, which is open to people of all ages and abilities.
Since the event is online, attendees can choose when, where, and with whom they want to end it. The race can even be done in increments and on different days, until the distance of 5 km is reached.
All participants are encouraged to post photos of themselves on social media along the way, using the hashtag #battenday2022 and tagging @BDSRA. Go here to register.
To help raise awareness and promote community support, the organization is also asking Batten families to share their stories about Batten’s patient or caregiving journey. Stories can be posted on the BDSRA Family Profiles webpage.
The association will be assignment daily activities and batten facts leading up to the day.
In the UK, the Batten Disease Family Association (BDFA) is celebrating Awareness Day by providing a downloadable poster and repeating last year’s 13for13 fundraising challenge, named after the 13 types of Batten disease. Participants are asked to complete a challenge involving the number 13. Ideas include running 13 miles, reading 13 Braille words daily, walking 13 laps of land, or rolling in a wheelchair 13 times around a city block.
“Last year, we asked a few schools to take on the challenge, with one school running a 13 obstacle course for students,” the organization wrote on a webpage about the event. “The staff completed a half marathon and together they raised over £3,000 for the BDFA!”
The organization is also again seeking the help of the UK Parliament to raise awareness of Batten by wearing orange ties, socks, ribbons, pin badges or other items on June 9. Orange is the official Batten color in the UK. To honor this day, the BDFA hopes to have many monuments and structures illuminated in orange.
The group is also asking members of the community to share their stories about Batten on their social media platforms.
The BDFA will once again have its own official Awareness Day song, with this year’s song written and performed by 15-year-old Poppy Brownnutt in honor of two of her deceased Batten cousins. The single was produced by fan David McGovern, featuring Paul Fairbairn. McGovern plans to release the song on his “Beyond” label in time for Awareness Day.