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June 9, 2025
Our goal is to raise awareness and funds by advocating for the Batten disease community affected by all CLN types.
Funds raised will go towards the BDSRA Foundation's greatest need(s). If you're raising funds for this specific fundraiser through your Fam Fund, you may choose where your donations are directed (greatest need, support, research, or advocacy).
Together, We Are Batten Advocates for a Cure.
The deadline to order T-shirts has passed. T-shirts were shipped in late May. You may still register for the International Batten Disease Awareness Day Virtual 5K on June 9.
There is something for EVERYONE to do to raise awareness and funds for Batten disease and the BDSRA Foundation for International Batten Disease Awareness Day on June 9:
- Donate to any BDSRA Fundraising team - There are many teams and individual fundraising pages. Click here to view them and make a donation to help us reach our $100,000 goal!
- SHOP - We have secured fundraising with several outside companies that are partnering with us and giving money back for Batten Awareness Day. Click here to check them out!
- Share our Batten facts on social media - From June 1-9, we'll post a fact about Batten disease to our social media channels (Facebook, Instagram, LinkedIn, Twitter/X). Share these posts to raise Batten disease awareness!
- Contact your congressional reps - CALL TO ACTION! Click here to email & call your representatives today about the importance of Medicaid and research in our Batten community.
- Participate in the Virtual 5K - What exactly is a Virtual 5K? It is just like any other 5K, except there is no official race location. The virtual part of this means no traveling and no early start times! It also means you choose where, with whom, and even how you want to complete the 5K. This 5K can be completed any time leading up to June 9th or after.
- Print a Virtual 5K bib - Download and print one of our racing bibs from the main Awareness Day page and write who or what you're battling for, and post it to social media using the hashtag #BattenDay2025. Full instructions are on the main Awareness Day page.
- Utilize our Toolkit - This toolkit comes with a letter you may email or print, and a social media graphic and message to post!
- Participate in Friday Reflection - On May 30, June 6, June 13, and June 20, we will post a question on our social media channels (Facebook, Instagram, LinkedIn, Twitter/X) and invite you to offer your thoughts in the comments!
Fam Funds allows your family to share your story within your communities and effectively raise awareness and direct funds to support a specific mission area year-round. Your Fam Funds Page is your International Batten Disease Awareness Day page. With your Fam Funds link, invite donors to donate in honor of Batten Awareness Day. Batten Awareness Day funds generated through your Fund will be directed to your chosen mission area.
PARTICIPATE IN OTHER BDSRA EVENTS:
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- Coffee Chats, hosted by Batten parent Heather Dainiak, are held twice a month. These chats are a safe space for parents and caregivers of all CLN types. Click here to learn more.
- Grief Chats are held for bereaved Batten parents, as part of our Life Goes On program, every other month at 7 PM EDT on a Sunday. Click here to learn more.
