Monday, December 5^th, NJ began screening newborns for ALD. They are the 31^st state in our country that has added ALD to their newborn screening panel. 

What does that mean? 

It means that people in NJ will no longer receive a late diagnosis for ALD. 

What does that mean? 

It means that families will now be provided with knowledge and the power to monitor their children and treat ALD if/when needed. 

What does that mean? 

Jack’s story will be part of the history of our disease.

I try not to focus on the what ifs, but I will to help explain the enormity of this news. What if ALD been part of the newborn screening panel in NJ 25 years ago? We would have known that Jack had ALD shortly after his birth. We would have likely struggled to hear this news about our perfect, chubby, healthy first born, but we would have gotten through it and moved forward. We would have learned about ALD and found doctors who knew the disease. We would have been prepared. When Jack was a young boy, we would have recognized that Jack’s reactions to a simple illness where a result of adrenal insufficiency and that his behavior was not defiance or ADHD. We would not have wasted time. We would have gotten him treatment sooner. Had ALD been part of NJ newborn screening panel 25 years ago, Jack would have had a stem cell transplant earlier and he would likely be living a very typical life today.

It’s not just the pain we could have avoided. It’s not just the lack of words and independence and need for constant care. NJ spent well over $1,000,000 on Jack’s education. He now receives SSI, Medicaid, and support from DDD — and will for his entire life. Jack’s life is complicated/fragile, and he is also expensive to care for – for us/our state/our country.

So, this is a win WIN for future parents, NJ, taxpayers, and people who believe in the power of science!

I shared this news on social media yesterday and received a lot of notes assuming our family had a large role in this exciting development. We are very small fish in this beautiful pond. Elisa Seeger and the ALD Alliance, Taylor Kane and Remember the Girls, ALD Connect, and the piles and piles of doctors, parents and advocates made this happen!!! 

There are still too many states who are NOT testing for ALD. If you live in one of those states, please let me know and I will connect you with people who can help you help to make it happen.

Love, Jesse