Virtual 5K event hopes to raise funds and awareness about Batten disease

Fundraiser to mark International Batten Disease Awareness Day on June 9

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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An illustration of a person walking.

The Batten Disease Support and Research Association (BDSRA) is challenging people to walk, run, or bike a virtual 5K anytime from now through June 9 as part of International Batten Disease Awareness Day, an annual effort to raise awareness about the disease.

People can register to participate as an individual, start a new team, or join an existing team. After registering, participants can set a goal for how much money they want to raise. This year, the organization’s fundraising goal is $10,000, which will be used to build and maintain staff who can provide support and advocacy for people with any type of Batten disease and their families.

“Our goal is to honor and support those affected by Batten disease and to raise awareness and funds so BDSRA can continue to advocate for all [Batten] types,” the organization stated on the awareness day webpage.

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People of all ages and abilities are encouraged to participate in the virtual 5K

Batten comprises a group of rare genetic disorders that can cause several neurologic symptoms such as vision loss, progressive motor and cognitive decline, and seizures. The many types of Batten disease are classified based on the person’s age when symptoms begin.

The virtual 5K has no fixed location, which means that people don’t need to travel and can join the event from anywhere. All ages and abilities are welcome to participate.

Participants don’t have to complete the whole 5K all at once. Instead, they can break it up into smaller distances and keep track of how far they’ve gone until they reach the full 5K.

The association is also asking participants to can take pictures of themselves while they’re walking, running, or biking their 5K, and then post them on social media during International Batten Disease Awareness Day using the hashtag #BattenDay2023.

By tagging BDSRA in the post, the organization can see all the pictures people are sharing while raising awareness and funds for Batten.

There’s also a contest until April 30 to find a design for the T-shirt for this year’s awareness day. Submissions are being accepted on the contest site, and the winner will be announced mid-May.

Anyone in the U.S. participating in the 5K and who’d like to wear the T-shirt on June 9 should order it before midnight on May 11. The T-shirts will be sent out in late May. T-shirts can also be purchased by anyone in the U.S. not participating in the virtual 5K.

There’s also a racing bib that can be downloaded for printing so that participants can write who they’re dedicating their virtual walk/run/bike to.