Neurogene Inc. announced that its Phase 1/2 Trial of NGN-101 Gene Therapy for the treatment of CLN5 Batten disease is now fully enrolled, with plans to provide interim clinical data and a regulatory update in the first quarter of 2025.

Click the button below to read the full press release from BDSRA alongside our international partners.

As part of our Life Goes On program for bereaved Batten parents, the next BDSRA virtual Grief Chat will be held this Sunday, August 18 at 7 p.m. EDT. If you’ve already completed the Grief Chat form, you will receive an email reminder one week before and the day of the chat.

If you haven’t attended a Grief Chat this year, please click the button below to register.

Together, the BDSRA Foundation and BDSRA Canada, with our Global Research Initiative (GRI) partners, are delighted to announce the inaugural GRI Grant Round is inviting Expressions of Interest. We seek to support the most promising research ideas worldwide that address key research questions and areas of unmet need in Batten disease.

Submissions CLOSE FRIDAY, AUGUST 30. To learn more about the Program, including the top 10 research priorities, and how to apply, please click the button below.

The BDSRA Foundation Board of Directors is accepting applications for new members until August 31, following the Board By-Laws. Advocates who are experienced in Batten disease, bi-lingual, and have experience in education, law, fundraising, or advocacy are encouraged to apply.

All applications will be reviewed and applicants may have phone interviews. Elections will be held at a fall board meeting, and all applicants considered will be notified of the decisions made.

Click the button below for more information.

National Nonprofit Day recognizes nonprofits’ goals and positive impacts on communities and the world. For over 35 years, we have advocated tirelessly for Batten families of all CLN types. Thank you for your never-ending support as we continue to support Batten families, fund and facilitate research, and advocate for treatments and cures.

Invest in our mission by clicking the button below!

The University of Rochester Batten Center is conducting a study on decision-making about the use of Cerliponase Alfa (Brineura) in families of individuals with CLN2 Batten disease. The URBC is interested in hearing from all affected families, whether or not your child has ever received this treatment. The study consists of a questionnaire that should take no more than 30 minutes to complete.

Click the button below to learn more or email Batten@URMC.Rochester.edu.