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The Path with Becky Quick: Unlocking the Rare Genetic Code 2/10/26

Feb 10, 2026
Adam Anderson, a Florida lawmaker and rare disease advocate who lost his son Drew to Tay‑Sachs, discusses expanding newborn whole genome sequencing. He shares the long diagnostic journey, building a statewide screening program, partnerships with researchers and industry, privacy safeguards, and how he turned personal loss into public policy to help other families.
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ANECDOTE

Early Signs And Parental Persistence

  • Adam Anderson described Drew as a happy, healthy baby until developmental concerns appeared around six months.
  • The family initially faced disbelief from doctors before noticing regression and pushing for testing.
ANECDOTE

Diagnosis Confirmed By Genetic Testing

  • Genetic testing at 15 months gave the family a diagnosis of Tay‑Sachs.
  • They learned Tay‑Sachs was ultra‑rare and devastating, with severe neurological decline.
ANECDOTE

Turning Grief Into Action

  • The Andersons mobilized immediately: networking, fundraising, and joining trials.
  • They connected with researchers and nonprofits to support gene therapy efforts.
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