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Pushing for ALD Newborn Screening

By Pam Johnson

Published March 01. 2013 9:47AM
Sen. Meyer Press Photo
Branford’s Brian Kelley with his dad, Jack Kelley and mom, Jean Kelley, listen in as Senator Ed Meyer (D – 12) speaks in favor of legislation requiring ALD screening in all newborns. Branford State Representatives Pat Widlitz (D-98; far left), and Lonnie Reed (D-102; partially obscured) also spoke in favor of the bill.

The push to screen CT newborns to stave off devastating effects of treatable disease is on in Hartford, with help from Branford’s Kelley family.

Born in 1988 and diagnosed with Adrenoleukodystrophy (ALD) over two decades ago, Brian Kelley’s the namesake of Brian’s Hope, non-profit dedicated to supporting awareness and prevention of ALD.  Together with his parents Jean and Jack Kelley, Brian and three other ALD families testified at a public hearing before the state legislature’s Public Health Committee Feb. 27.

All spoke in support of Senate Bill 465, “An Act Requiring Newborn Screening for Adrenoleukodystrophy.” Newborn screening the life-threatening disease can lead to it being cured before symptoms appear. 

 “This one intervention could quite literally save lives,” noted Jean Kelley, in a letter to supporters posted Feb. 26 at www.brianshope.org “We hope to honor Brian with the passage of this bill, and save the lives and suffering of other boys diagnosed with ALD.” 

A hereditary disease, ALD is estimated to affects one in every 20,000 boys. They’re born missing an enzyme which leads to the eventual destruction of Myelin. Myelin allows conduction of impulses between the brain and body. ALD rapidly steals away sight, speech, ambulation and the ability to eat most foods and liquids by mouth. It can result in severe disability or death if not treated.

Early identification can not only treat the disease, but even cure it before first symptoms ever appear, as several medical professionals attested at the Feb. 27 public hearing. Branford State Representatives Pat Widlitz (D-98), Lonnie Reed (D-102) and State Senator Ed Meyer (D, District 12) were at the hearing and spoke in support of the bill.

“It is critically important that we ensure the health and safety of our children by screening for this devastating, but entirely treatable disease by identifying it near birth,” said Meyer. “I am very thankful to the Kelleys for bringing this issue to my attention, and promise my full support in ensuring the passage of the bill.”

“We’re hoping to make an impact on the lives of other little boys moving forward,” said Jean Kelley at the hearing.

The Kelleys also stressed that, at the costs $1.50 per child; the screenings would create immense savings in both medical bills and needless suffering. Supporters hope Bill 465 will be voted out of committee soon. Connecticut would be one of the first states to pass the law. Both New Jersey and New York are considering similar proposals.

 

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