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Squawk Pod

The Path with Becky Quick: Life with a Rare Disease 1/8/26

Squawk Pod

CNBC

Business News, News, Investing, Business

4.2543 Ratings

🗓️ 8 January 2026

⏱️ 34 minutes

🧾️ Download transcript

Summary

It's the story Becky Quick never thought she would tell. Her own. As a mom to a child with a rare genetic disease, Squawk Box co-host Becky Quick dove into the hidden world of the many ways biological chance can change our lives. Thirty million Americans have a rare disease, which impact small numbers of patients. Two-thirds of those thirty million are children; 95% of rare diseases don’t have an FDA-approved treatment. But despite those eye-popping numbers, millions of people continue to suffer from diseases that often go overlooked by the broader healthcare industry. Small patient populations mean drug companies and investors aren’t willing to invest in the space, and outdated regulatory frameworks make the process of developing lifesaving treatments too slow for the families that need them. Becky and her husband Matt Quayle share the journey of their 9-year old daughter Kaylie, who has a rare genetic condition called SYNGAP-1. Over the next several episodes of The Path, Becky will highlight the unique challenges faced by millions of Americans, put a spotlight on the bottlenecks slowing progress in the rare disease space, and talk with stakeholders who have the power to bring about change. Join us in advancing awareness and understanding of rare diseases. Visit CNBC.com/Cures to access clips, resources, or to sign up for our weekly newsletter. Follow Becky Quick on X: @BeckyQuick Please share your thoughts or rare disease story in the comments, and join us on The Path.

Transcript

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0:00.0

This was not even something I thought I could talk about.

0:05.0

I want to say it was the first birthday party.

0:07.0

It felt like awake.

0:08.0

How do I give her the best possible life?

0:10.0

Does this mean that she's going to die?

0:13.0

If she can just walk, if she can just talk, if she can just find a friend.

0:32.4

I'm Becky Quick. I've spent the last 25 years on camera at CNBC, covering the people,

0:35.6

the politics, the highs and lows of American business.

0:37.5

Good morning, everybody. Welcome to Squawk Box right here on CNBC.

0:40.1

Let's take a look at what's been happening with the U.S. Equity Futures.

0:42.7

But there's another part of my life.

0:45.4

Actually, it's the best part.

0:49.8

Bye.

0:53.4

I'm a mom to a child with a rare disease.

0:56.5

There are fewer than a couple thousand people in the world like her.

1:00.3

And my own story, my family's story, is one that I never thought I would tell.

1:06.2

It's taken me years to get here.

1:10.4

Music me years to get here.

1:21.5

This is The Path, a podcast series about the hidden world of rare disease.

1:29.4

I say hidden because there are thousands of potential conditions, diseases, disorders, illnesses, lurking in our genes hidden in the basic code that makes us who we are. These are misdirections and

1:35.3

neuro pathways, deficits of critical proteins or enzymes, genetic typos, if you will,

1:41.2

countless ways that biological chance can change our health or change our lives.

...

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