Advocates go global this June 9 for Batten Awareness Day

Events worldwide seek to raise funds, share stories and educate

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by Mary Chapman |

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From sharing stories on social media — using hashtags like #BattenDay2023 and #BattenAdvocatesForACure — to wearing something orange this June 9 to participating in a 5K fundraising challenge, supporters globally are poised to mark this year’s International Batten Disease Awareness Day.

Observed annually, the June 9 Awareness Day calls attention to Batten disease, also known as neuronal ceroid lipofuscinosis, a group of rare inherited neurological disorders thought to affect approximately one in every 100,000 individuals worldwide.

The global event targets the general public in addition to lawmakers, public authorities, scientists, healthcare professionals, and industry representatives.

For its part, the Batten Disease Support and Research Association, known as BDSRA, is providing ways to raise funds and awareness to support people with Batten and their families and caregivers. The association also is urging supporters to take to social media to share personal accounts of living with the disease or advocating for others who do.

“Our goal is to honor and support those affected by Batten disease and to raise awareness and funds to BDRSA can continue to advocate for all CLN types,” the organization notes on an event webpage.

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

Using hashtags #BattenDay2023 and #BattenAdvocatesForACure

The BDSRA is again hosting an International Batten Disease Awareness Day Virtual 5K that challenges people to walk, run, or bike to raise needed funding. The goal this year is $10,000, to be used to build and maintain organization staff who can support and advocate for Batten patients. So far, more than $42,000 has been raised.

The event is open to individuals of all ages and abilities and can take place anywhere and anytime leading up to June 9. Those joining in may become part of a team or go solo — and rather than complete the entire 5K all at once, participants can break it up into smaller distances until they’ve logged five kilometers, or about 3.1 miles. Tagging the BDSRA permits the association to see all the images participants are sharing.

Participants are encouraged to take photos of themselves while they’re running, biking, or walking their 5K, and then share them on social media on June 9 using the hashtag #BattenDay2023. Also available is a BDSRA downloadable racing bib, on which participants may write the name of the person to whom they’re dedicating their 5K.

This year, the nonprofit introduced a contest to find a design for the T-shirt to be worn during awareness day events. The submitted designs were winnowed to three, and the community last month voted for a drawing submitted by Kristine Bonagofsky of Washington. Her winning submission pictured a butterfly next to the words love, hope, and cure.

In the run-up to June 9, the association also is asking supporters to help raise awareness by sharing facts it posts about the disease, such as information on some of the symptoms patients face. Batten can cause a number of neurologic symptoms including progressive motor and cognitive decline, vision loss, and seizures.

Due in part to efforts by the New York/New Jersey BDSRA chapter and New York state Sen. Andrew Lanza, the state of New York issued a resolution declaring June 9th Batten Disease Awareness Day.

In the UK, the Batten Disease Family Association (BDFA) is marking Awareness Day by providing a downloadable poster and repeating a storytelling project to bolster its collection of Batten stories on its website and social media platforms. Those interested in sharing their story should send an email to [email protected]. Upon request, the BDFA can assist family members or caregivers over the phone.

With each person taking part nominating their own friends to get involved, we believe we can reach an ever wider audience and use the power of social media to raise invaluable awareness as well as crucial funds.

“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 foundation notes on an event webpage.

The charity organization also is asking people to help raise awareness by donning something orange, the official color for Batten in the UK. The #ShowUsYourOrange Nominating Challenge began on June 5 and involves participants taking a photo of themselves wearing the color, sharing the picture on social media, and nominating a friend to do the same. Participants also are asked to donate to the BDFA.

“With each person taking part nominating their own friends to get involved, we believe we can reach an ever wider audience and use the power of social media to raise invaluable awareness as well as crucial funds,” the BDFA states on a webpage about awareness day.