CHECK CLOSINGS AND DELAYS

Branford mother continues push for ALD screening with patience and passion

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BRANFORD - When we first met Jean Kelley, she was pushing for a new law to require newborn screening for adrenoleukodystrophy (ALD), the devastating genetic disease that took away her young son's ability to talk, move or feed himself.

11230732_739799889498996_8925777076455445072_o"It was passed in June of 2013. In August, we had a ceremonial bill signing with Gov. Malloy," says this Branford mother, primary caregiver of Brian, who is now 27. The hereditary condition only affects males. Early detection in infancy is key.

"If one is able to intervene at the point where the first neurological symptoms appear, either with bone marrow transplant or with … stem cell therapy, it's very likely that you will arrest further deterioration," says Dr. Myron Genel of the Yale Child Health Research Center.

Even so, testing has yet to begin.12038740_739799892832329_6920738610653881105_o

Click here for the entire column from The Hartford Courant.

Click here to learn more about Brian's Hope.