BDSRA Foundation

After many conversations, we finally convinced Linda to join our team three years ago, and she loves her role as much as we love her! In addition to keeping the office running, Linda enjoys working with all our families, organizing the family parties and mailing the party kits, and volunteering with her fellow grandparents at the conference each July. Please congratulate her on her third year with BDSRA! #BattenAdvocatesForACure #WorkAnniversary #BattenDisease #RareDisease #OfficeManager

Giving stock to the Foundation can potentially help you reduce future capital gains. While giving this way sounds complicated, our financial partners are here to help. Please consult your tax advisor. To learn more, please contact BDSRA President & CEO Amy Fenton Parker at [email protected]. Invest in our mission: https://ow.ly/15IX50U9aEz #BattenAdvocatesForACure #StockDonations #Donate #Give #BattenDisease #Fundraising #Support #Research #Advocacy #RareDisease

Giving Tuesday is in ONE WEEK! What’s a BDSRA project, initiative, or cause you’re passionate about? Haley's Heroes | A Batten Disease Foundation will raise funds on December 3 to sponsor childcare at the 2025 BDSRA Annual Family Conference in Lincoln, Nebraska to help ensure it’ll come at no cost for Batten families. Whatever you’re passionate about, help raise funds for it this Giving Tuesday on December 3. Visit our Giving Tuesday guide on our website to learn more about how you can spread the word and raise funds: https://ow.ly/cbeP50UbfPa #GivingTuesday #BattenAdvocatesForACure #BattenDisease #BDSRA #HaleysHeroes #RareDisease #Giving #Donate #Fundraising

The holiday season can be a difficult time for bereaved Batten families. On Sunday, December 15, we invite you to our Holiday Grief Chat for bereaved Batten parents. This chat is an opportunity to gather with fellow bereaved Batten parents, discuss your grief, and support each other no matter where you are on your Grief journey. Full details: https://ow.ly/Hscr50U8ilq #HolidayGriefChat #BattenDisease #RareDisease #Grief #Support #Bereaved #BDSRA #BattenAdvocatesForACure

Happiest birthday wishes go out to our staff rare SIB and database manager, Noah! We wish we could celebrate with him in person, but since we can't, please take a moment to celebrate him with us. Many happy returns, Noah! #BattenAdvocatesForACure

This week Amy, Ineka and Heather Dainiak, our new Director of Family Support, attended the 8th meeting of the Translational Research Conference for the Management?of NCLs in Chicago. There were rare disease families, scientists and industry?experts in attendance. Topics of discussion included lessons learned, emerging therapeutic approaches in NCL preclinical and clinical?research. "This was a terrific week of learning and relationship building. I am looking forward?to sharing more with our community and implementing?what I've learned here this week," says Amy. #BattenAdvocatesForACure #BDSRA #BattenDisease #NCL #Research #BattenResearch #Clinical #Chicago

From the Batten Disease Global Research Initiative to regularly scheduled communication, collaboration with our international partners is crucial to keeping our Batten community informed and supported. Your $5 Friday donations help make that possible. That’s the power of FIVE. ?? https://ow.ly/LJPo50SKqQU #5dollarfridays #fundraising #BattenDisease #BattenAdvocatesForACure

The first day of the NCL Translational Research Conference carried the theme “Doing nothing is our biggest risk.” Researchers from within the Batten community and invited guests presented the importance of streamlining Natural History Studies, for all CLN types, worldwide. From there discussions regarding the use of AI to biomarkers to gene therapy were presented. The audience comprised of nearly 100 online and in person families, patient advocacy organizations, clinicians, researchers, and industry partners from around the globe. #BattenAdvocatesForACure #BattenDisease #NCL #Research #BattenResearch #Clinical #Chicago

Just TWO years ago in this meeting room, the groundwork was laid for revitalizing a crucial program for our Batten families. Fast forward, and we’ve transformed that vision into the Batten Disease Clinical Center of Excellence program! Today’s CoE meeting in Chicago, ahead of this week’s NCL Translational Research Conference, is a testament to our growth, innovation, and dedication. #BattenAdvocatesForACure #BattenDisease #CoE #Research #Clinical #NCL #Chicago #RareDisease #Collaboration

BE ON THE LOOKOUT! ???? Our Annual Appeal letter will be hitting your mailboxes soon. The letter from our President & CEO Amy Fenton Parker highlights our recent milestones and the different ways you can support our mission: https://ow.ly/xoIN50U8gx5 #BattenAdvocatesForACure #AnnualAppeal #Letter #Donate #Give #BattenDisease #Fundraising #Support #Research #Advocacy #RareDisease