As of yesterday, December 5th, the state of New Jersey finally began screening newborns for ALD! This extremely important milestone has been a long time coming (a decade) and it’s been no small feat. It’s a story of perseverance which shows a small group of people can make a huge difference that will undoubtedly save many lives.
In 2010, I met Matthew Gagliardi, son of Jill & Steve, a ten year old boy who was living with ALD. Although my dad died from ALD when I was five years old, this was the first time I had met someone with ALD outside of my own family, and the first time I saw how devastating the effects of ALD could be on a child. Matthew wasn’t much younger than I was but he was bedridden and could no longer walk or talk. I learned that even though Matthew began experiencing symptoms of ALD several years prior, he was initially misdiagnosed with ADHD, and by the time his family learned of his true diagnosis it was too late for a bone marrow transplant, which could have saved his life had he been diagnosed earlier. Sadly, Matthew passed away in 2014.
In 2012, a newborn screening blood spot test for ALD was developed and it became possible for boys to be diagnosed with ALD at birth, before symptoms developed, and in time for lifesaving treatment. As soon as I learned about this development, I wrote a letter to my then-State Senator Steven Sweeney asking him to introduce a bill to add ALD to New Jersey’s newborn screening panel (at the time, NJ was already screening newborns for over 50 diseases). I still have a copy of that letter, in which I explained, “By the time Matthew’s parents found out he had ALD, it was too late for him to be saved. If New Jersey requires newborn screening for ALD, boys like Matthew will have a good chance of being cured.” I went on, “If it could help save someone’s life, even if it’s just one, I know my dad would be proud. If New Jersey screens newborns for ALD, I know we can save lives.” Senator Sweeney introduced an ALD newborn screening bill in the New Jersey state legislature that same year.
In 2013, when I was fourteen, I testified before the New Jersey Senate Health Committee in support of the ALD newborn screening bill. After the New Jersey Senate and Assembly passed the bill unanimously, it was signed into law by Governor Chris Christie. I, along with many other advocates, including Elisa Seeger, Jesse Torrey, and Miranda McAuliffe, spent the next nine years working to get the state of New Jersey to actually implement ALD newborn screening.
In addition to these amazing ALD advocates and many others, another person without whom this accomplishment would not have been possible is New Jersey State Senator Troy Singleton. Back in 2012, Senator Singleton was a co-sponsor of the newborn screening bill, and since that time he has always fought for the ALD community. In 2018, when the state had still not implemented ALD screening, Senator Singleton arranged and invited me to attend a meeting with Department of Health officials at the New Jersey State Newborn Screening Laboratory.
In sum, I am so glad to finally be able to announce that babies born today in New Jersey will be screened for ALD and will have a chance at life – something my dad and Matthew Gagliardi did not have. We did it!