Adrenoleukodystrophy With Elisa From New York
From Rare Connection by Joanna
April 14, 2026 · 30 min · Season 6 · Episode 9
About this episode
Elisa shares the story of her son Aidan's battle with adrenoleukodystrophy and her advocacy for newborn screening.
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...
People in this episode
Host: Joanna
Guest: Elisa
Topics covered
- genetic condition
- newborn screening
- grief
- healthcare policy
- childhood illness
Keywords
- adrenoleukodystrophy
- ALD
- newborn screening
- genetic condition
- childhood illness
- health policy
- grief
Mentioned in this episode
Books & works: adrenoleukodystrophy
Places: New York
More episodes of Rare Connection
- Can Targeted Radiation Change the Future of Brain Cancer? | Dr. Marc Hedrick | Plus Therapeutics · June 4, 2026 · 1h 40m
- McCune Albright Syndrome With Dr. Giwa From Atossa Therapeutics · May 9, 2026 · 1h 6m
- Friedreich's Ataxia With Alexis From Tennessee · April 22, 2026 · 43 min
- 26 Year Stomach Cancer Survivor Healing with Food with Chef Chuck · April 8, 2026 · 1h 51m
- Denovo (Genetic But Not Inhereited) With Jenny From Texas · March 23, 2026 · 53 min
- New Drug For Duchenne Muscular Dystrophy With Dr. Steven Quay · March 19, 2026 · 1h 13m
Explore listener stats, chart rankings, contacts and more on the Rare Connection podcast page.