Aidan Jack Seeger was a happy, healthy, spirited NY boy who, at age 6, suddenly developed vision and concentration problems. His parents thought he just needed glasses. He was misdiagnosed several times. His sight went entirely, then his ability to walk and talk. Eventually, doctors figured out that Aidan had adrenoleukodystrophy (ALD), a mysterious and deadly brain disease. Eleven months later, he was gone. The worst part? If the disease had been caught early, Aidan could still be alive and well today.

My quest for newborn screening started in 2012 - while I laid in a hospital bed next to my 7 year old son, Aidan. 

Aidan was dying from a condition called ALD (adrenoleukodystrophy) - a condition which led to him losing all of his abilities - the ability to see, hear, walk, talk, eat - a horrific disease which stripped my spunky blue eyed son from his life as a 7 year old who should have been enjoying his days playing with his friends, eating ice cream and enjoying the sunshine.

My call from that hospital bed at NYU to the NY State Newborn Screening Lab in Albany where I asked why my son had not been tested at birth for ALD - if he had we could have monitored and treated him in time - allowing him to go on to live a normal, healthy life. Devastatingly, Aidan was a late diagnosis - the damage to his brain was irreversible and our hope through bone marrow transplant was slim - Aidan passed away after 10 months in the hospital.

In 2013, "Aidan's Law" was signed in New York - the first state to test every baby for ALD.  In 10 years of testing NY has tested 2.2 Million babies and diagnosed 157 babies- giving these families the crucial diagnose in time to monitor and treat - saving their child's life.

Newborn Screening seems self explanatory, but it’s a little more involved - 5 drops of blood are taken from every baby’s heel after they are born - this blood goes to the state lab where the blood spot card is then tested for the conditions that have been approved by that state. Unfortunately - this system is not uniform nor is it keeping up with the advancement of medical treatments. The ACHDNC (Advisory Committee on Heritable Disorders in Newborns and Children) was  disbanded on April 3, 2025 - the federal committee which reviews conditions that were nominated and “recommends” them to the states - something called the Recommended Uniform Screening Panel. Each state has the option to determine when or whether they decide to add these conditions to their state panels - This disparity leads to “Death by Zip Code”.  One state can test for 32 conditions and another 38 conditions -

It is the luck of the draw whether your child will live or die. 

As we stand at a critical juncture in health care reform, we are grateful to the Secretary of Health Robert F. Kennedy Jr. for his leadership in recognizing the inefficiencies that plague our current system. With an unwavering commitment to saving both children and taxpayer money, we can reshape our approach to the newborn screening system to better serve patients and their families.

We need to acknowledge the necessity of a system to review newborn screening conditions.

To achieve meaningful change, we propose a series of bold initiatives to the new and improved system to build a new and improved maternal health and child health committee that prioritizes patient representation and scientific integrity in our newborn screening system. 

This effort will save thousands of children's lives and save money through early diagnosis.

ALD Alliance and Newborn Screening Alliance, spearheaded by Elisa Seeger has been working on Newborn Screening both federally and in states for 13 years-

Please join us in asking HHS Secretary RFK Jr. to meet with Elisa and the Newborn Screening Alliance to shape the future of newborn screening!!!