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Bee For Battens is pleased to announce that it has entered into a two year project with Dr Steven Gray of The Gene Therapy Centre of the University of North Carolina , one of the United States Leading Gene Therapy Lads.
The Project which was sanctioned on Jan 18th 2011, the 2nd Anniversary of Batten Disease sufferer Saoirse Heffernan, who died form the condition aged just 5. Saoirse's brother Liam, the only remaining child of parents Tony & Mary Heffernan also suffers from Late Infantile Batten Disease (CLN2). The childrens mother, Mary stated; "We hope that our charities investment into this trial will benefit other children affected by this condition around the world and leads to a cure for this cruel disease which will eventually take both of our precious children".
This new funding announcement provides hope for children affected by Batten Disease, a rare and fatal neurological disorder affecting children. Matching research funds were pledged by the Health Research Board of Ireland. Dr. Steven Gray will lead the project development at UNC in collaboration with Dr. Jude Samulski (Director, UNC GTC), Dr. Mark Sands (Washington University in St. Louis, USA), and Dr. Jonathan Cooper (King’s College, London, UK).
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