Support Grows for ALD Screening

Hartford, CT – “If they are identified and treated early, the majority can remain asymptomatic.” These are the words of Dr. Jack Kelley, whose son Brian (24) has been quietly but doggedly fighting a rare genetic disorder called adrenoluekodystrophy (ALD). ALD affects the tissue lining around the adrenal glands and nerve cells. The disorder comes with different levels of severity, with the most severe form causing very rapid degeneration of the nervous system in young boys. The trait is most common in boys and men, but women suffer as well. In the worst cases like Brian’s, the disorder leads to loss of muscle function that permanently confines patients to wheelchairs. Brian’s case was discovered when he was 6 years old, after he had begun to show symptoms. For 18 years, with the help of friends and family, he has courageously borne the hardships that come with ALD. Since that time, he and his parents, Jack and Jean, have devoted their time and effort to help other people who are born with the disorder. They have worked tirelessly to raise awareness and help children with the disorder through their foundation, Brian’s Hope (www.brianshope.org). Today the technology exists to quickly detect and treat the problem at birth, so that people born with ALD can live lives nearly symptom free (see attached fact sheet). “More than anything else, I have been personally inspired by the Kelley’s selfless commitment to help others avoid the hardships that Brian has had to endure,” Sen. Fasano said. “Their advocacy through their foundation has been thorough and thoughtful and they convinced me that this is good public policy that will save lives and help those born with ALD to avoid the most severe symptoms of the disease. I said I’d do everything that I can to help pass this law.” State Representative Vincent Candelora heard their story and immediately signed on to the bill. “This issue is black and white- it’s an easy decision. Pre-screening for this devastating disease is inexpensive and is effective in saving the life of a child. Screening of newborns has saved or improved the lives or more than 12,000 children but that number can be so much higher with a little more effort and a little more investment. I am confident that support for this proposal will grow in the General Assembly as more and more people become aware of Brian’s story.” [caption id="attachment_24038" align="alignnone" width="300"] Candelora stands with the Kelley family and a bipartisan group of legislators to call for support for ALD screening of newborns[/caption] The test that newborns will go through is quick and easy, and it costs only about $1.50-2.00 per test. In a recent interview, Brian’s mother Jean had this to say about the bill, “It’s a way to save lives. We’re talking about lives, lives that won’t happen without the test.” Today the Public Health Committee held a public hearing on SB 465 “An Act Concerning Newborn Screening for ALD.” People testifying in support of the bill include: Jack, Jean, and Brian Kelley; Rep. Candelora; Sen. Fasano; Dr. Ann Moser of the Kennedy Krieger Institute and Johns Hopkins University; and Dr. Amber Saltzman the Director of the Stop ALD Foundation. The Public Health Committee, co-chaired by Sen. Terry Gerratana and Rep. Susan Johnson must determine whether or not the bill reaches the state Senate for a vote prior to the committee’s April 5^th deadline.