Squawk Pod: The Path with Becky Quick – Unlocking the Rare Genetic Code (February 10, 2026)

Episode Overview

In this deeply moving and informative episode of "The Path" series from CNBC’s Squawk Pod, host Becky Quick sits down with Adam Anderson, Florida State Representative and parent-advocate, whose firsthand journey through the rare disease world after his son Drew's diagnosis and passing from Tay Sachs disease led to real legislative change. They explore the emotional, medical, and policy challenges of rare diseases, culminating in Florida’s landmark Sunshine Genetics Act—a pioneering program aimed at offering all newborns free whole genome sequencing. The episode is both a personal narrative of loss and healing and an inspiring guide to the power of community, advocacy, and public-private partnerships in the pursuit of earlier rare disease diagnoses, better care, and future cures.

Key Discussion Points & Insights

1. The Anderson Family’s Story

• Drew’s Early Life & Diagnosis

  • Drew, the Andersons’ third child, appeared healthy at birth, but by six months, his mother noticed missed developmental milestones and, eventually, signs of regression.
  • Multiple misdiagnoses led to frustration until persistent advocacy resulted in genetic testing, revealing Tay Sachs disease.
    • Adam Anderson: "There were many, and they were all wrong." (08:44)
  • Tay Sachs, an ultra-rare neurodegenerative condition, affected only around 16 children in the U.S. at the time.

• The Devastating Impact of Rare Disease

  • The Andersons grappled with their son’s rapid degeneration and frequent seizures, seeking support groups and expert care nationwide.
  • Adam describes the heartbreak upon learning there were no treatments:
    • Adam Anderson: "The message was more or less spend as much time as you can with him." (13:23)

• Turning Loss Into Action

  • After Drew’s passing at age four, the Andersons hosted Christmas as usual to support their daughters and extended family.
    • Adam Anderson: “If we canceled Christmas, we’d be giving in. We couldn’t do that.” (21:10)
  • Their experiences fueled Adam’s shift into rare disease advocacy and, ultimately, state policy work.

2. Advocacy and Legislative Change

• Entry Into Public Service

  • Adam’s decision to run for state legislature was driven by personal experience and a sense of calling.
    • Adam Anderson: "I started [praying] every day...And that was the catalyst because these doors started opening." (23:03)

• Building the Sunshine Genetics Act

  • The Sunshine Genetics Act (HB 907) began as notes on a cocktail napkin, inspired by the need for earlier, accurate rare disease diagnosis and cross-university collaboration.
    • Adam Anderson: "It's giving Florida a once in a generation opportunity to lead the nation in genomic and precision medicine." (25:53)
  • The law creates a state-funded, opt-in whole genome sequencing program for newborns, piloted at one hospital and designed for statewide expansion as funding increases.
    • Adam Anderson: "We set up a state funded newborn screening program to offer children whole genome sequencing at birth free of charge." (29:19)

• Ensuring Data Privacy

  • Genetic data is protected by HIPAA and stored in a de-identified, anonymous fashion for research use, with parents always controlling their child’s information.
    • Adam Anderson: "The parents will own this information from day one and that's protected by HIPAA." (33:53)

• Building Infrastructure for Cures

  • The Act also established the Florida Institute for Pediatric Rare Diseases at FSU, with a regional genetic testing lab, 23 ongoing research projects, and a new clinical health center for undiagnosed diseases starting diagnostics with whole genome sequencing.
    • Adam Anderson: “The approach really flips that traditional healthcare system upside down, where...it starts with whole genome sequencing. So from day one, the entire genome is mapped…” (37:57)

3. The Broader Landscape of Rare Disease

• The Scale of the Rare Disease Challenge

  • Though individually rare, collectively these diseases affect 30 million Americans—greater than the population of Texas or Florida.
    • Adam Anderson: “When we look at them collectively…there’s almost 10,000 known rare diseases that affect 30 million people in the United States.” (40:18)

• Public-Private Partnerships and Market Realities

  • Adam, a self-described capitalist, emphasizes the need for public and university support for rare disease research, as markets alone can't drive innovation for ultra-rare conditions.
    • Adam Anderson: “A Merck is never going to invest money into solving a rare genetic disorder that they can sell to 16 people a year…But that's where I think government’s role and universities’ role in the research is..." (41:29)

• A Model for National Scaling

  • The Florida program is designed to be replicable in other states, with a hope that others will adopt similar strategies rather than wait for federal action.

Memorable Quotes & Moments

• On Diagnosis Odyssey and Hope:

  • "It could take four to five years on average, sometimes seven or eight years, to diagnose a child with a rare disease. They might spend 7, 10, even more…17 trips to doctors." — Adam Anderson (28:40)
  • "What if we can get to them before they have symptoms? What if we can get to them before the neurological damage is done?" — Adam Anderson (26:26)

• Turning Grief Into Advocacy:

  • "You know, a lot of times people will say, well, you're doing this for your boy, it's a legacy. And I suppose it is, but I'm doing it for the other kids. That's really what motivates me." — Adam Anderson (45:06)

• On Collective Power in Rare Disease:

  • "When we look at rare diseases collectively...that's more than the people that live in Texas or...Florida. More people than live in one of those states is affected by a rare disease." — Adam Anderson (40:18)

Notable Timestamps

| Timestamp | Segment/Topic | |------------|----------------------------------------------------| | 05:19 | Adam introduces himself and his family | | 08:10 | Detailed discussion of Drew's developmental regression | | 09:20 | The moment of official Tay Sachs diagnosis | | 13:23 | Confronting the lack of available treatments | | 14:26 | Joining support groups and pursuing gene therapy | | 17:10 | Describing the rapid progression of Drew's illness | | 21:10 | Losing Drew and the family’s first Christmas after | | 22:43 | Journey to the state legislature and faith | | 25:44 | Creation, passage, and aims of Sunshine Genetics Act | | 29:19 | Launch of free, opt-in whole genome sequencing for newborns | | 33:53 | Protecting genetic data privacy | | 36:22 | Overview of the Florida Institute for Pediatric Rare Diseases | | 40:18 | The true collective scale of rare diseases | | 41:29 | Limits of market-driven research for ultra-rare diseases | | 42:23 | National scalability of the Florida model | | 43:07 | Adam on the greatest personal hurdles | | 45:06 | Adam’s motivations—legacy and helping future children |

Tone & Atmosphere

The episode’s tone is intimate, frank, and hopeful. Adam Anderson speaks with emotional candor about the heartbreak of losing a child, the resilience required to persist for change, and the practical optimism guiding his legislative efforts. Becky Quick’s voice conveys empathy and clarity as she helps distill complex scientific and policy challenges into accessible, poignant storytelling. The conversation is a call to action for both community and systemic change in tackling rare diseases.

Takeaways for Listeners

• Awareness: Rare diseases, while individually uncommon, collectively affect millions—meaning early detection and intervention are of profound importance.
• Advocacy: The power of lived experience and personal loss can be transformed into advocacy and systemic reform that benefits countless others.
• Innovation: Public-private partnerships, alongside decisive state-level action, can accelerate research and better outcomes before federal moves materialize.
• Community: Support, empathy, and shared experience build resilience for families navigating the world of rare disease.

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