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UNITED STATES - OCTOBER 20: Beth McGinn, whose daughter Ellie is diagnosed with Leukodystrophy-LBSL, is pictured before an interview with Roll Call, October 20, 2016. (Photo By Tom Williams/CQ Roll Call)

UNITED STATES - OCTOBER 20: Beth McGinn, whose daughter Ellie is diagnosed with Leukodystrophy-LBSL, is pictured before an interview with Roll Call, October 20, 2016. (Photo By Tom Williams/CQ Roll Call)

Copyright 2016 CQ-Roll Call, Inc.