International Batten Disease Awareness Day is June 9

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by Mary Chapman |

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International Batten Disease Awareness Day

From participating in a virtual 5K to sharing family stories and videos, supporters are gearing up for International Batten Disease Awareness Day on June 9.

The goal is to heighten awareness among the general public as well as  lawmakers, public authorities, industry representatives, scientists, and health professionals.

Awareness and education are key to improving the recognition, diagnosis, understanding, and management of Batten disease, a group of rare inherited neurological conditions thought to affect about one in every 100,000 individuals worldwide.

For its part, the Batten Disease Support and Research Association is presenting the 2021 International Batten Disease Awareness Day Virtual 5K. Because the race is virtual, participants can choose when, where, with whom, and even how they will be involved. The 5K can be done at any time — even in increments — leading up to June 9.

The “race” is open to people of all ages and ability. For $20, participants may register as an individual or part of a team. On Awareness Day, participants are encouraged to post photos of themselves on their 5K route and tag #battenday2021.

“Our goal is to honor and support those affected by Batten disease and raise awareness,” the organization states on a webpage.

In the U.K., the Batten Disease Family Association (BDFA) has a host of ways to support Awareness Day, including storytelling. Building on last year’s project, the organization seeks to compile a library of Batten narratives on its website and social media platforms.

“There are many ways to tell your story and we are looking for perspectives from all family members in our community, including our bereaved community,” the BDFA states on its website.

The organization also plans to produce a short Awareness Day video clip featuring photos of patients and family members. “It would be wonderful to celebrate them all this way,” the BDFA added. “You could include a quote about a favorite memory and we could feature that too.”

In addition, the BDFA is hoping to again have as many members of the British Parliament as possible help raise Batten awareness by sporting orange ties, scarves, and BDFA pin badges on June 9. In the U.K., orange is the official color for Batten. To mark the day, the organization also hopes to see as many buildings and landmarks as it can illuminated in orange.

To raise funds for the BDFA, the organization is presenting “13 in Whatever Way to Raise 13K for Awareness Day.” In recognition of all types of Batten, supporters are invited to complete a challenge involving that numeral. Ideas for the day or that week include: running, walking, or biking 13 miles or kilometers; running or walking 13 track laps; running up and down stairs 13 times; doing 13 daily pushups; baking 13 cakes to sell; or reading 13 words in Braille each day.

“It would be absolutely wonderful to have as many people in our Batten community involved, raising awareness and helping to raise funds for the continued work of the BDFA,” the organization added.

In another effort, the BDFA sought community input for a double-sided single that musician David McGovern produced to support the BDFA. One side of the cut is a cover of “Stay the Same” by Joey McIntyre. The song on the other side, a cover of the INXS track “Beautiful Girl,” is the organization’s Awareness Day track and will be released Friday (June 4).