Tuesday, December 2, 2014

Plight of Branford resident inspires push for nationwide newborn screening

By Michelle Tuccitto Sullo

A Branford family that successfully campaigned to require newborn screening for a rare but potentially fatal disease in Connecticut is hoping to repeat its success on the national level.
Brian Kelley, 26, of Branford has adrenoleukodystrophy, or ALD, which caused him to lose his sight, speech and ability to move around when he was 7 years old.
Last year, Connecticut lawmakers passed legislation requiring health care institutions to screen newborns in their care for the disease, and the state is in the process of implementing the program.
In a letter dated Nov. 26, U.S. Sen. Richard Blumenthal, D-Conn., wrote to U.S. Department of Health and Human Services Secretary Sylvia Burwell, asking for ALD to be added to the department’s list of recommended newborn screenings.

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