Supporters Set to Mark International Batten Disease Awareness Day

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by Mary Chapman |

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From participating in a virtual 5k to sharing personal stories, supporters are set to mark International Batten Disease Awareness Day, observed annually on June 9.

The goal of the global event is to raise awareness among the general public as well as legislators, industry representatives, public authorities, researchers, and healthcare professionals.

Batten disease is a group of rare inherited neurological disorders believed to affect about 1 in every 100,000 people around the world. Awareness and education are crucial to recognizing, diagnosing, understanding, and managing the disease.

For its part, the Batten Disease Support and Research Association (BDSRA) is offering ways to support  Batten patients and their families.

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“Families, their advocates, and supporters bring the message of hope and the awareness of the disease to thousands of people and inspire charitable gifts 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 support and research.”

The BDSRA is again celebrating Batten families by presenting the International Batten Disease Awareness Day Virtual 5K, which is open to individuals of all ages and abilities.

Because the event is online, participants may choose when, where, and with whom they wish to complete it. The race may even be done in increments, and on different days, until the 5K distance is reached.

All participants are encouraged to post photos of themselves on social media on their route, using the #battenday2022 hashtag and tagging @BDSRA. Go here to register.

To help spread awareness and promote community support, the organization is also asking Batten families to share their stories about the Batten patient or caregiving journey. The narratives may be published on the BDSRA Family Profiles webpage.

The association will be posting daily activities and Batten facts leading up to the day.

In the United Kingdom, the Batten Disease Family Association (BDFA) is observing Awareness Day by offering a downloadable poster and reprising last year’s 13for13 fundraising challenge, named for the 13 types of Batten disease. Participants are asked to complete a challenge involving the number 13. Ideas include running 13 miles, reading 13 words in Braille daily, walking 13 laps of a field, or rolling in a wheelchair 13 times around a block.

“Last year, we had a couple of schools undertake the challenge, with one school doing a 13 obstacle course for the pupils,” 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 looking to enlist the help of the British Parliament in raising Batten awareness by wearing orange ties, socks, ribbons, pin badges, or other items on June 9. Orange is the official color for Batten in the UK. To honor the day, the BDFA is hoping to get many landmarks and structures illuminated in orange.

The group is also asking community members to share their stories about Batten on their social media platforms.

The BDFA will again have its own official Awareness Day song, with this year’s tune written and performed by 15-year-old Poppy Brownnutt in honor of two of her cousins who died from Batten. The single has been produced by supporter David McGovern, along with Paul Fairbairn. McGovern plans to release the song on his “Beyond” record label in time for Awareness Day.