EPISODE · Apr 14, 2026 · 29 MIN
Adrenoleukodystrophy With Elisa From New York
from Rare Connection · host Joanna
Send us Fan MailElisa's son, Aidan, was born healthy—but by first grade, he began losing his vision. He was later diagnosed with adrenoleukodystrophy (ALD), a rare genetic condition that progresses rapidly without early intervention. Aidan passed away at just 7 years old.After his diagnosis, Elisa learned that a newborn screening test for ALD already existed—but it had not been implemented in her state at the time.In this episode, Elisa shares Aidan’s story and how she turned her grief into advocacy. She played a key role in passing ALD newborn screening in New York and is now advancing Aidan’s Law (H.R. 534) to expand screening nationwide.We also discuss her work with the newly launched coalition, Surge to Save Newborns, and a first-of-its-kind study outlining state-by-state gaps in newborn screening and the resources needed to ensure all babies have access to recommended tests.This conversation highlights a critical issue: babies across the United States face unequal access to life-saving screening based solely on where they are born.ALD Alliance- Aiden Jack Seegar Foundation ALD Alliance - Aidan Jack Seeger Foundation for AdrenoleukodystrophySurge to Save Home - Surge to Save NewbornsSupport the show
What this episode covers
Send us Fan Mail Elisa's son, Aidan, was born healthy—but by first grade, he began losing his vision. He was later diagnosed with adrenoleukodystrophy (ALD), a rare genetic condition that progresses rapidly without early intervention. Aidan passed away at just 7 years old. After his diagnosis, Elisa learned that a newborn screening test for ALD already existed—but it had not been implemented in her state at the time. In this episode, Elisa shares Aidan’s story and how she turned her grief int...
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Adrenoleukodystrophy With Elisa From New York
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