Supporters set to rally for Batten Disease Awareness Day on June 9

Nearly $49K raised so far in BDSRA's virtual 5K challenge

Mary Chapman avatar

by Mary Chapman |

Share this article:

Share article via email
Illustration of two people hugging.

Fundraising, storytelling, and advocacy are the focus of this year’s International Batten Disease Awareness Day, observed annually on June 9 to bring attention to the group of inherited neurological conditions thought to affect about 1 in every 100,000 individuals globally.

The overarching aim of the worldwide event is to heighten awareness of Batten disease among the general public as well as lawmakers, public authorities, industry representatives, scientists, and healthcare professionals.

Awareness and education are key to Batten recognition, diagnosis, understanding, and management. The disorder can cause symptoms such as seizures, vision loss, and progressive motor and cognitive decline.

For its part, the Batten Disease Support and Research Association (BDSRA) is providing ways to support the Batten community. It’s reprising its International Batten Disease Awareness Day Virtual 5K for participants of all ages and abilities, with the goal of raising $75,000 to help the organization support and advocate for Batten families. Nearly $49,000 has been raised thus far.

Recommended Reading

How stability helps parents of children with chronic illness

BDSRA surpassed last year’s $10K goal

“We know you can do it! We surpassed our original goal of $10,000 last year and tallied over $53,000 thanks to you and your advocacy,” the BDSRA states on a campaign webpage.

The event is digital, meaning participants may select when, where, and with whom they want to complete it. It may also be finished incrementally, and on different days, until the 5K distance is reached. Participants may register through June 9.

The organization is encouraging participants to post photos of themselves on their social media platforms on their race route, using the #battenday2024 hashtag and tagging @BDSRA.

Through June 9, supporters may download and print the organization’s 5K racing bib, on which they may write the name of the person for whom they’re advocating, and share a photo or video of it on social media. Those not participating in the race may also join this activity.

The BDSRA asks supporters to contact their lawmakers from June 1 to 9 about issues important to the community by using a pre-written letter available through its advocacy toolkit. Also during that period, the organization will post on its social media channels a shareable daily fact about Batten and rare diseases. In addition, it’s again asking families to write about their Batten journey, sharing the path the disorder has taken them on. For more information about these initiatives, send an email to the foundation at [email protected].

Recommended Reading
Banner for

So long to ‘The Long Sprint,’ but not my fight against Batten disease

Awareness events planned in UK

In the U.K., the Batten Disease Family Association is marking this year’s awareness day by offering a downloadable poster and a “B for Batten” fundraising challenge. It’s also again presenting its storytelling project for community members, which can involve writing a poem or essay, taking a video, or sending a photo with a story about life with Batten.

Supporters may also seek to light up notable area buildings in orange — the color representing Batten — to help raise awareness. “Over the years several families have used their influence to get local buildings lit up orange to help raise awareness, they look amazing! It is a great way your local landmark can get involved, and lots of [buildings] do this regularly for other causes,” the organization states on a webpage.

For story submissions or help with illuminating a structure, send an email to Lisa at [email protected].