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BDSRA 2019 Board Nominations

August 30, 2018

The BDSRA Board of Directors has several open seats for the term beginning January 2019. If you have expertise you feel would be relevant and beneficial to the organization and are interested in learning more about serving, please contact the […]

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REGENXBIO Announces Pipeline Expansion with RGX-181 Gene Therapy for CLN2 Form of Batten Disease

August 30, 2018

The expansion of Batten Disease treatment options is crucial to our community’s future. We are excited to share this announcement from REGENXBIO who plans to submit an IND for a new gene therapy for CLN2 in 2019. Because of news […]

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Sibling Highlight: Award Winning Poet Shalini Rana

June 20, 2018

In April, Shalini Rana, sibling of Shiv Rana CLN6, won third place in the Steger Poetry Prize. The Steger Poetry Prize is a prestigious award presented by celebrated poet Nikki Giovanni at Virginia Tech University. This year there were over 100 entries which were narrowed down to […]

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