Beyond Batten Disease Foundation, based in Austin, TX, is dedicated to finding a cure for Batten disease and preventing similar rare genetic diseases that impact children worldwide. Founded by Charlotte and Craig Benson in 2008, the foundation collaborates with scientific resources, funding organizations, and families affected by Batten disease to drive research and advance treatment options.
With a focus on spearheading a cohesive research strategy, Beyond Batten Disease Foundation has invested $35 million in research, funded groundbreaking studies, and supported families like the Herndons, Allmans, and Sikorras in their fight against Batten disease. Through partnerships with academia, the pharmaceutical industry, and government agencies, the foundation aims to bridge the gap between scientific discoveries and effective treatments for this devastating neurodegenerative disorder.
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