Beyond Batten Disease Foundation, based in Austin, TX, is a non-profit organization dedicated to finding a cure for Batten disease and other rare genetic diseases that affect children. Through their research activities and collaborations with scientific resources, academia, and the pharmaceutical industry, they strive to drive progress towards treatments and cures for these devastating disorders.
Founded by Charlotte and Craig Benson in 2008, the foundation has invested $35 million in research and has funded groundbreaking studies that have been cited over 9,100 times. With a strong focus on advancing treatment options, they work closely with families affected by Batten disease, such as the Bensons, the Herndons, and the Watsons, to raise awareness and support for their mission.
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