Bonus: The Path with Becky Quick: A Father’s Rare Determination 7/2/26

Squawk Pod

CNBC

Investing, Business, Business News, News

4.2 • 547 Ratings

🗓️ 2 July 2026

⏱️ 44 minutes

🔗️ Recording | Apple Podcasts | RSS

🧾️ Download transcript

Summary

John Crowley does not stop at bad news. His two young children, Megan and Patrick, were babies when they were diagnosed with Pompe disease, a rare and fatal form of muscular dystrophy. Crowley changed his entire life in a race against the clock to find a treatment for his kids and reinvented his career at the same time. It was a breakthrough that inspired a Hollywood film, he tells Becky Quick for CNBC Cures. Since then, Crowley has built two biotech companies focused on rare diseases that were later acquired by larger pharmaceuticals and today leads the industry lobbying group, BIO. Check out the video playlist of the first season of The Path: https://www.youtube.com/playlist?list=PLVbP054jv0Ko-hAZBSDwZaejelC-FMjc_ Join us in advancing awareness and understanding of rare diseases. Visit CNBC.com/Cures to access more clips, resources, or to sign up for our weekly newsletter. Learn more about rare disease – and what to do in a diagnosis – at the National Organization for Rare Disorders: https://rarediseases.org/ 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	The grief, the fear, the anxiety. Every day was a borrowed day for our kids. What are we going to do?
0:08.9	It's that sense of desperation. Like, if I don't do this, nobody will.
0:13.0	Desperation, fear, determination.
0:34.0	I'm Becky Quick. Welcome to The Path from CNBC Cures, a podcast series about the people, the struggles, the science of rare disease, and the determination to do something about it. I'm a mom of a child with a rare genetic disease.
0:40.4	Happy birthday, two.
0:46.7	My nine-year-old daughter, Kaylee, has a condition that's called SynGAP 1.
0:52.0	She's part of a small patient group. There are only about 1,700 other people in the world with this diagnosis. Essentially, she only produces half of the CINGAP protein that's needed for brain development.
0:58.7	That means that she has seizures, developmental delays, and intellectual disabilities.
1:02.7	But what Kaylee doesn't lack is courage.
1:06.1	Go!
1:15.0	Or determining Or determination.
1:20.5	Recently, Kaylee went a little further into the world with a little less of a safety net.
1:21.7	Swim baby.
1:28.0	Swimming on her own at our local pool without a swim belt for the very first time.
1:29.6	Kaylee, you can do it.
1:31.1	And she did great.
1:32.2	She went for it.
1:33.2	She jumped right in.
1:34.4	Her feet touched the bottom.
1:36.2	She popped right back up.
1:37.6	Kali, I'm so proud of you!
1:40.3	And then she swam from one end of the pool to the other.
	...

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