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. 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.
At the beginning of this legislative session, Jack approached his old friend Len Fasano – the two played football together at Yale – to propose a bill that would require all newborns in the state of Connecticut to be screened for ALD. Newborns are already tested for a myriad of disorders and diseases, and this would be one more minor test. Len immediately set out to see what he could do.
“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.”
The test that newborns will go through is quick and easy, and it costs only about $1.50-2.00 per test. “There is a cost to the state for requiring this test in the short term, but by identifying and treating the disease early, there will be a financial savings to taxpayers over time in reduced health care and education costs. And, it goes without saying, that the human value of saving a child afflicted with this disease cannot be measured in dollars,” Sen. Fasano said.
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.”
Brian, his parents, and Sen. Fasano today attended the Public Health Committee’s 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; 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.
A bipartisan group of legislators joined Sen. Fasano in publicly supporting the bill today; including: Rep. Vincent Candelora (R-86), Rep. Themis Klarides (R-114), Noreen Kokoruda (R-101); Sen. Edward Meyer (D-12); Rep. Larry Miller (R-122); Rep. Lonnie Reed (D-102); Peggy Sayers (D-60); and Rep. Patricia Widlitz (D-98).
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 5th deadline.
Please do all in your power to influence your colleagues to vote for this bill. Can you suggest the best way for me to make my opinion known to as many leglislators as possible?