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.

Register Now


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!


Download Your Bib


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:

    • 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. 
        Total Raised

        $41,638.17

        of $100,000.00 goal raised
        Top Fundraisers
        Bridget Patterson's Fundraising Page
        $618.00
        James Patterson's Fundraising Page
        $473.25
        Barb McDonough's Fundraising Page
        $442.25
        Connor Burkhardt's Fundraising Page
        $410.00
        Emma Dellomorte's Fundraising Page
        $377.00
        Michael and Oliver Tucker's Fundraising Page
        $304.80
        Quart Douglas's Fundraising Page
        $285.75
        Max Miller's Fundraising Page
        $258.00
        Brittany Berry's Fundraising Page
        $229.21
        Kristy and Ryan Stevens Stevens's Fundrais...
        $211.00
        Kati Rybicki's Fundraising Page
        $202.10
        Inna Shniter's Fundraising Page
        $180.00
        Joni Watkins's Fundraising Page
        $163.00
        Chesney Lofgren's Fundraising Page
        $158.00
        Maddie Cassidy's Fundraising Page
        $157.84
        Rally For Ryan
        $157.75
        Mark Plath's Fundraising Page
        $156.00
        Laurie Pierleoni's Fundraising Page
        $151.00
        Samantha Isenberg's Fundraising Page
        $140.00
        Jennifer Burchett's Fundraising Page
        $139.00
        Angela Cramer's Fundraising Page
        $134.00
        Laura Goupil's Fundraising Page
        $132.00
        Stephanie Burkhardt's Fundraising Page
        $127.00
        Keri Loughlin's Fundraising Page
        $114.00
        Sharon Tinsley's Fundraising Page
        $100.60
        Susan Converse's Fundraising Page
        $100.00
        Theresa Beardsley's Fundraising Page
        $95.00
        Ashley Finnegan's Fundraising Page
        $95.00
        Barb Prehoda's Fundraising Page
        $94.00
        Jessica Padley's Fundraising Page
        $90.00
        Sophia French's Fundraising Page
        $83.00
        Diane Burkhardt Kovac's Fundraising Page
        $81.90
        Tina Garver's Fundraising Page
        $81.00
        Amy Parker's Fundraising Page
        $80.90
        Mitchell McClarnand's Fundraising Page
        $80.00
        Heidi Saunders's Fundraising Page
        $80.00
        Joshua Kant's Fundraising Page
        $80.00
        Shane Saunders's Fundraising Page
        $77.00
        Vicki Mutschler's Fundraising Page
        $76.00
        Nick Padley's Fundraising Page
        $75.00
        Pamela Diaz's Fundraising Page
        $75.00
        Mark Thompson's Fundraising Page
        $74.00
        Kat Galligan's Fundraising Page
        $70.00
        Nicola Hamilton's Fundraising Page
        $66.00
        Lothian Hamilton's Fundraising Page
        $65.00
        Charlotte Hamilton's Fundraising Page
        $65.00
        Lachlan Hamilton's Fundraising Page
        $65.00
        Nicola Hamilton's Fundraising Page
        $65.00
        Anne Kender's Fundraising Page
        $65.00
        Sarah Smith's Fundraising Page
        $65.00
        Hannah Joyce's Fundraising Page
        $65.00
        Violet Kender's Fundraising Page
        $64.00
        Mick Kender's Fundraising Page
        $64.00
        Maureen Paur's Fundraising Page
        $61.00
        Brian Burkhardt's Fundraising Page
        $60.00
        Katie Vahle's Fundraising Page
        $59.00
        Cory French's Fundraising Page
        $58.00
        Penelope Miller 's Fundraising Page
        $57.00
        Courtney Miller's Fundraising Page
        $57.00
        Paul Miller's Fundraising Page
        $52.00
        Amber LaNigra's Fundraising Page
        $52.00
        Kasey Dellomorte's Fundraising Page
        $52.00
        Delilah Dellomorte 's Fundraising Page
        $52.00
        Jude and Joy Silverman's Fundraising Page
        $51.00
        Mary Pirozzoli's Fundraising Page
        $51.00
        Patrick Kotnik's Fundraising Page
        $50.75
        Alex Bailey's Fundraising Page
        $50.75
        Josephine Soldo's Fundraising Page
        $50.00
        Stuart Lawder's Fundraising Page
        $50.00
        JAMI JUVERA's Fundraising Page
        $50.00
        Tamela Ritter's Fundraising Page
        $50.00
        Terri Herr's Fundraising Page
        $50.00
        Jennifer Hubalek's Fundraising Page
        $45.00
        Michael and Oliver’s Fight
        $40.00
        Danika Linville's Fundraising Page
        $40.00
        Joanne Padley's Fundraising Page
        $40.00
        Donald Padley's Fundraising Page
        $40.00
        Matt Madden's Fundraising Page
        $40.00
        Hannah Joyce's Fundraising Page
        $40.00
        Kimberlee Harrison's Fundraising Page
        $40.00
        Jacquelin DeLong's Fundraising Page
        $40.00
        Tina Horn's Fundraising Page
        $40.00
        Laura Foster's Fundraising Page
        $40.00
        Matthew Kroening's Fundraising Page
        $37.00
        Ashley Pinkston's Fundraising Page
        $32.00
        Racey Pinkston's Fundraising Page
        $32.00
        Amber Evans's Fundraising Page
        $32.00
        Cathy Painter's Fundraising Page
        $31.00
        Amy Wilson's Fundraising Page
        $25.00
        Melissa Boes Kirk's Fundraising Page
        $25.00
        Gloria Alvarez's Fundraising Page
        $25.00
        Taylor French's Fundraising Page
        $25.00
        Robert Dicker's Fundraising Page
        $25.00
        Beth Heath's Fundraising Page
        $25.00
        Michael Dovel's Fundraising Page
        $25.00
        Lindsey Morrison's Fundraising Page
        $25.00
        David Dietz's Fundraising Page
        $25.00
        Kristin Robar's Page
        $25.00
        Coyne Nancy's Fundraising Page
        $25.00
        Jennifer Dellomorte's Fundraising Page
        $14.90
        Anthony Dellomorte's Fundraising Page
        $14.00
        Joanne Shaughnessy's Fundraising Page
        $14.00
        George Prehoda's Fundraising Page
        $13.00
        Michaelene Milo's Fundraising Page
        $11.00
        Norah Milo's Fundraising Page
        $11.00
        Larry McDonough's Fundraising Page
        $8.00
        Michael McDonough's Fundraising Page
        $8.00
        Nancy Drake-Loftin's Fundraising Page
        $5.00
        Errol Loftin's Fundraising Page
        $5.00
        Nela Loftin's Fundraising Page
        $5.00
        Rebecca Canorro's Fundraising Page
        $5.00
        Daniel Canorro's Fundraising Page
        $5.00
        Robert Canorro's Fundraising Page
        $5.00
        Andrew Canorro's Fundraising Page
        $5.00
        Steph Mcclarnand 's Fundraising Page
        $0.00
        Joelle Anderson's Fundraising Page
        $0.00
        Noah Siedman's Fundraising Page
        $0.00
        Clarissa Joyce's Fundraising Page
        $0.00
        Kelsey Kant 's Fundraising Page
        $0.00
        Joseph Friedrich's Fundraising Page
        $0.00
        Paul Tinsley's Fundraising Page
        $0.00
        Haley Padley's Fundraising Page
        $0.00
        Thomas Padley's Fundraising Page
        $0.00
        Top Teams
        FamFunds Team
        $21,454.20
        Daxx Deserves
        $3,830.47
        Team Connor B
        $2,183.90
        Team Patterson
        $1,942.25
        Emma's Roses (Dellomorte)
        $1,256.90
        Isla's Army
        $1,123.15
        Team Milo Man
        $668.75
        Hope for Izzy
        $467.25
        Team McDonough
        $458.25
        Laura Tucker's Team
        $394.80
        Rally for Ryan
        $253.75
        BDSRA Staff Team
        $132.40
        Team Marshall
        $100.60
        Team Peter
        $25.00
        Weimer Lab
        $25.00
        Sharing is Caring
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