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First Steps Into Research Announced.

Posted by Bee For Battens in Research News | 0 comments

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Bee For Battens is pleased to announce that it is taking its first steps into the field of Batten Disease research, entering into  a project partnership with our USA based affiliated charity; The Batten Disease Support & Research Association .

The two projects will take place in different research institutes in the United States, namely the University of Iowa, and the Havard Medical School located in Massachusetts General Hospital.

The projects which will be funded by fundraising activities for Bee For Battens and a sizeable research donation from Bons Secour Hospital, are the first research projects been undertaken by Bee For Battens.

The Harvard project will see Development of a Clinical Registry and Biorepository for NCL Disorders,  which is being run by Dr John Staropoli. This crucial step into developing a truly comprehensive registry will prove benefical to not just those affected by Batten Disease but can be adapted for all rare diseases.

The second research project is being conducted by Dr Beverley Davidoson who is looking into "Determining the feasibility of gene transfer to ventricular lining cells of primate brain for widespread distribution of TPP1 activity by CSF"

Bee For Battens has taken a 50% stake in the BDSRA initiated research project at the Harvard instituition, which is costing $50,000 to run. 

The total costs of the research being under in the University of Iowa has a total cost of just over $100,000, with Bee For Battens taking a 25% stake in the BDSRA funded project.

As part of the Irish based Medical Research Charities Group, Bee For Battens is hoping to seek interest from Irish and European based researchers later this year when it will seek research proposals form medical research and clincial treatment trials for batten disease.

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