The Batten Disease Global Research Initiative Grant Program aims to invest in the most promising research worldwide that addresses key research questions and areas of unmet need in Batten disease.

This may include, but is not limited to, one or more of the Top 10 Research Priority questions for Batten disease, as identified in the 2024 Research Priority Setting Partnership survey conducted by the Kennedy Krieger Research Institute in partnership with the BDSRA Foundation, in accordance with the James Lind Alliance Method.

Top 10 Research Priorities for Batten Disease

1. What are the best gene-targeted therapy options for Batten disease? How can this research be accelerated?
2. What are valid, reliable biomarkers that can inform Batten disease diagnosis, prognosis or treatment response?
3. What impact does Batten disease have on organs and body systems outside the central nervous system?
4. Can disease progression be halted or reversed?
5. How does Batten disease impact cognition and behavior?  What are the best treatment strategies for these symptoms?
6. What strategies can be used to enhance early diagnosis (including newborn screening)? What are the impacts of early detection and diagnosis?
7. What interventions are best for maintaining function in Batten disease (including communication, learning, motor skills, mobility, etc)?
8. Which therapies have the potential for the fastest translation from bench to bedside? How do we accelerate therapy development?
9. What can be learned about Batten disease from similar lysosomal disorders? Which disease processes represent shared therapeutic targets?
10. Which complementary health approaches (including diet, supplements, exercise, etc) are helpful for improving symptoms or slowing progression in Batten disease?

Grants of up to USD $50,000 will be awarded for one year, with the potential of renewal based on outcomes in the first year. Exceptional applications may be funded at a higher amount if the budget request is justified.

Funding will be provided by the Global Research Initiative, with financial contributions made by core member organizations BDSRA Foundation, BDSRA Canada, and BDSRA Australia, with in-kind support from BDFA. In addition to the collective funding provided by these organizations, co-funding support may be sought from other interested parties. Additional organizations or individuals who choose to co-fund specific projects under the Global Research Initiative Grant Program will be recognized as Global Research Initiative Funding Partners (find out more under FUNDING PARTNERS below).

The Global Research Initiative will be open for Expressions of Interest (EOI) from Monday, July 29, 2024, per the requirements stipulated in the Information for Applicants document.

Information for Applicants and Research Grant Program Guidelines will be available here once the EOI call is open.

Before submitting an EOI, applicants are encouraged to read the Research Grant Program Guidelines below.

EOIs must be submitted no later than midnight in the applicant’s local time zone on Friday August 30, 2024.