Efforts of Branford Resident Influence Action for Newborn ALD Screening Across the Nation

After the state passed a law last year requiring newborn screening for adrenoleukodystrophy, or ALD, a Branford resident is urging for the screening to be nationwide, the New Haven Register reports.

Jean Kelley’s son, Brian Kelley, 26, was diagnosed with the disease when he was 7, causing him to lose his sight, speech and ability to move around. Kelley has been the key advocate for Public Act 13-242, requiring newborn screening for ALD in Connecticut. ALD is a deadly genetic disease that most severely affects boys and men with the most devastating form of the disease appearing in childhood between the ages of 4 and 10.

U.S. Senator Richard Blumenthal (D-Conn) issued a letter dated Nov. 26 to Health and Human Services secretary Sylvia Burwell urging the department to add ALD to its list of recommended newborn screenings.

According to the Register, Connecticut is currently in the process of implementing the program to screen newborns for the disease.

A press release from the Senator’s office stated that similar protections do not exist for babies nationwide. According to StopALD.org, it is urgent to invest in tools for early diagnosis so ALD can be identified as early as possible, while there is best hope for beneficial treatment.

“It is vital to get this test in place as soon as possible. It is proven to be truly life saving. Early detection will allow for treatment, setting these boys up for a normal and healthy life,” Kelley said in the press release. “We want to prevent other boys and families affected by ALD from facing the devastating, and life-changing challenges Brian has endured. We look forward to a day when no child will experience the effects of this insidious disease.”

Learn more about Brian Kelley and ALD.

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