FOR IMMEDIATE RELEASE
March 18, 2025
Batten Disease Global Research Initiative Announces Inaugural Grant Recipients
The Batten Disease Global Research Initiative (BDGRI) is proud to announce the recipients of its inaugural Research Grant round, awarding a total of USD $320,000 to six groundbreaking projects worldwide.
Following a robust selection process by a Grant Review Panel of eight international Batten disease experts, the nominated projects each address one or more of the “Top 10 Research Priorities for Batten Disease” as identified in the BDGRI Research Strategy.
The 2025 Grant Recipients and their projects are (in alphabetical order):
Professor Jonathan Cooper, PhD and Ewa Ziółkowska, PhD from Washington University in St. Louis, Missouri, USA
Project Title: Defining the anatomical basis of dysphagia (the inability to swallow) in Batten disease
Award: USD $50,000
Wendy Heywood, PhD from University College London (UCL) Institute of Child Health, London, UK
Project Title: TPP1 Dried Bloodspot assay feasibility testing for UK Newborn Screening
Award: USD $49,528
Professor Sara Mole, PhD from University College London (UCL) Great Ormond Street Institute of Child Health, London, UK
Project Title: Repurposing drugs for Batten disease
Award: USD $65,000
Professor John Østergaard, DMSci from the Centre for Rare Diseases, Department of Children & Youth, Aarhus University Hospital, Denmark
Project Title: Transcutaneous Vagal Stimulation in fear related episodes of dysautonomic sympathetic overactivity in CLN3 patients
Award: USD $50,000
Kasparas Petkevicius, PhD from the MRC Mitochondrial Biology Unit, Cambridge Biomedical Campus, University of Cambridge, UK
Project Title: Exploring the efficacy of bis(monoacylglycero)phosphate synthesis pathway intermediates in treating CLN8 Batten disease in preclinical models
Award: USD $50,000
Jill Weimer, PhD from Sanford Research, University of South Dakota, USA
Project Title: Integrative -Omics Profiling and Biofluid Biosignature Development in Large Animal Models of CLN1, -2, -3, -5, and -6
Award: USD $55,000
“The different forms of Batten disease encompass a lot of complex biological processes,” said David Pearce, PhD, Chair of the International Rare Disease Research Consortium and BDGRI Grant Review Panelist. “As such, the potential research avenues that are proposed in the 2025 grant round are very diverse. The recent grant review process employed expert and rigorous review to maximize not just the quality of the research, but its potential impact.”
Founded in 2024, the Batten Disease Global Research Initiative is a consortium of leading patient advocacy organizations worldwide that share the common goal of driving and investing in research for all forms of Batten disease. The founding members and donors include the BDSRA Foundation, BDSRA Australia, BDSRA Canada, and BDFA UK.
“In addition, the BDGRI consortium would like to extend its heartfelt gratitude to the Funding Partners who have generously contributed to the total research funding pool in 2025,” said BDGRI Program Lead Ineka Whiteman, PhD. “Our thanks to the Beyond Batten Disease Foundation, Drew’s Hope, NCL-Stiftung, and Noah’s Hope – Hope 4 Bridget, whose generosity has helped us reach our funding target of USD $320,000—a remarkable outcome for the BDGRI’s first-ever Grant Round.”
The eight esteemed members of the Grant Review Panel, consisting of four scientists and four clinicians from six countries, played a crucial role in assuring the integrity and robustness of the selection process.
“We are grateful for their involvement and commitment to scientific excellence and innovation, helping ensure these research funds will have the greatest possible impact,” Dr. Whiteman said.
For more information about the Batten Disease Global Research Initiative and the 2025 Grant Recipients, please visit BattenResearch.org.
About the Batten Disease Global Research Initiative
The Batten Disease Global Research Initiative (BDGRI) is an international consortium of peak patient advocacy organizations worldwide, that share the common goal of advancing research for all forms of Batten disease, or Neuronal Ceroid Lipofuscinoses (NCLs) and aims to invest in the most promising research worldwide, guided by the “Top 10 Research Priorities” for Batten disease. The founding members of the Global Research Initiative are the Batten Disease Support, Research, and Advocacy (BDSRA) Foundation (USA), BDSRA Canada, BDSRA Australia, and the Batten Disease Family Association (BDFA) (UK).
What is Batten disease?
Batten disease, commonly known as neuronal ceroid lipofuscinoses (NCLs), is a group of rare, inherited neurodegenerative disorders primarily affecting children. Caused by genetic mutations that disrupt the function of lysosomes and lead to the accumulation of toxic waste material in cells, this progressive condition results in symptoms such as vision loss, seizures, cognitive decline, loss of speech and language, severe motor impairment, and premature death. There are 13 forms of Batten disease, classified according to the affected gene (CLN1 to CLN14 disease, there is no CLN9 gene). While there is no cure, ongoing research into gene-based therapies, enzyme replacement, and small-molecule treatments offers hope for future disease-modifying therapies.
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