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The Spring issue of the Illuminator Newsletter

April 13, 2015

The Spring 2015 edition of the BDSRA newsletter is now posted.  For updates on research, fundraising, board news, and more click here:  Spring 2015 Illuminator

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CLN2 Enzyme Replacement Trial Opens First US Site

January 13, 2015

We are very happy to announce that the first United States site for the BioMarin CLN2 enzyme replacement study has been listed on clinicaltrials.gov. Dr. Emily De los Reyes at Nationwide Children’s Hospital in Columbus and her co-PI, Dr. Lenore Leowald are […]

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Charlee Nelson Inspires Utah Legislation Named in Her Honor

November 10, 2014

For Catrina and Jeff Nelson, losing their 6-year-old daughter Charlee on March 15, 2014, to late infantile Batten disease has been like a bad dream.  In the midst of their grief, the family stood in the private office of Utah […]

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