The BDFA is pleased to announce that we are partnering with our global counterpart organisations to offer in-kind support of a Batten Disease Global Research Initiative.

At their recent Annual Family Conference in St Louis, the BDSRA announced the formation of the Batten Disease Global Research Initiative marking a significant step forward for Batten disease research. This is a consortium of leading patient advocacy organisations worldwide, that share the common goal of advancing research for all forms of Batten disease.

The BDSRA Foundation, BDSRA Australia, BDSRA Canada, and Batten Disease Family Association (BDFA) are founding members of the Global Research Initiative. Under the guidance of the Batten Disease Global Research Initiative Grant Program, the group is working together to identify, foster, and collectively invest in the most promising research worldwide. The Batten Disease GRI aspires to accelerate therapeutic development, improve diagnosis and standards of care, and enhance the quality of life and outcomes for all individuals affected by Batten disease. This grant program aims to invest in the most promising research worldwide that addresses key research questions and areas of unmet need 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. Expressions of Interest will open on July 29.

“We are thrilled to announce the launch of our new research grant program, aimed at fostering innovation and supporting groundbreaking research in Batten disease around the globe,” BDSRA Foundation Head of Research & Medical Affairs Dr. Ineka Whiteman said. “This initiative underscores our collective commitment to advancing knowledge, empowering researchers, and really moving the needle towards more effective treatments and outcomes for our community.”

While the BDFA is not currently contributing financially, we have been involved in the development of this project and our Head of Scientific Affairs, Dr Joanna Nightingale, is part of the Batten disease GRI committee that oversees the grant application process alongside representatives from our global counterparts and experts in the field. We are looking forward to seeing the results of this research programme improving the lives of our community.

If you would like to find out more, please go to the link below.

http://battenresearch.org/
   

Please contact Jo Nightingale if you have any queries, joannanightingale@bdfa-uk.org.uk