The Path with Becky Quick: Finding Hope 1/30/26

Luke Rosen was working as an actor and writer in New York when his daughter Susannah was diagnosed with KIF1A, an ultra-rare neurodegenerative condition. It's often fatal. At the time they received Susannah's diagnosis, Luke and his wife Sally didn't have much hope. There was no treatment for KIF1A, and there wasn't much work being done on it among researchers.

But Luke, one of the most optimistic people you'll ever meet, did what so many parents of children with rare diseases do...he threw himself at the problem.

He and Sally started the KIF1A.org Foundation so they could start building research that could go towards finding a treatment for their daughter. It was the beginning of a long journey for the family. Ultimately, that journey led them to the n-Lorem Foundation, an organization founded by CNBC Cures Advisory Board member Dr. Stan Crooke that offers free ASO treatments to individuals with nano-rare diseases. Thirty years in the making, Antisense oligonucleotide (ASO) technology bridges genomic discovery to personalized medicine one patient at a time. Because of the work done by n-Lorem, Susannah is now receiving treatment for her KIF1A. Luke says the treatments helped for while, though he's now worried the disease is catching up.

For more about Susannah's story: visit: https://www.kif1a.org/

n-lorem's work is here: https://www.nlorem.org/

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.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Det här avsnittet är hämtat från ett öppet RSS-flöde och publiceras inte av Podme. Det kan innehålla reklam.

Avsnitt(2008)

A Chip Sell-Off, Netflix’s Report, & President Xi’s AI Pitch 7/17/26

Netflix shares are under pressure after its quarterly earnings forecast disappointed investors, and chip stocks are down amid concern about AI investment. JPMorgan Asset Management global market strat...

17 Juli 28min

Expanding Trump Accounts with IRS CEO & SSA Commissioner 07/16/26

Frank Bisignano serves as Commissioner of the Social Security Administration & CEO of the IRS, and now he’s being tapped to lead the expansion of Trump Accounts. In an extended interview, the Commissi...

16 Juli 30min

Jamie Dimon in Pennsylvania & Rich Kleiman in “Sports Week” 7/15/26

JPMorgan Chase CEO Jamie Dimon and Senator Dave McCormick (R-Pennsylvania) discuss the bank’s $24 million investment in Pennsylvania’s maritime industry. Both Dimon and Sen. McCormick discuss the futu...

15 Juli 32min

Bonus: Warren Buffett in Omaha 7/15/26

Warren Buffett plans to give away all of his Berkshire shares within eight years, but he has ended his 20-year-long philanthropic relationship with the Gates Foundation. In a sit-down interview with B...

15 Juli 1h 1min

Chamath Palihapitiya Goes All In on AI, SPACs, IBM, & Politics 7/14/26

Chamath Palihapitiya, host of the All-In Podcast and CEO of both Social Capital and 8090, sits down with Joe Kernen and Andrew Ross Sorkin for a wide-ranging interview. The founder and investor views ...

14 Juli 58min

The GOP’s Future, Apple Sues OpenAI, & the Musk-Altman Feud 7/13/26

After the death of Senator Lindsey Graham (R-SC), former Congressman Patrick McHenry (R-NC) discusses Sen. Graham’s legacy and the future of both the Republican and Democratic parties. Shares of SK H...

13 Juli 38min

SK Hynix Hits the Nasdaq & Talking FIFA with Men in Blazers 7/10/26

South Korean memory chip giant SK Hynix is now publicly traded on the Nasdaq, raising billions from U.S. investors. OpenAI’s Fidji Simo, second in command at the company, is leaving to manage a chroni...

10 Juli 38min

The Top State for Business & Debating Prediction Markets 7/9/26

CNBC's Megan Cassella reports on the latest strikes between the U.S. and Iran, and Democratic Senate Nominee for Maine Graham Platner is ending his campaign. Former Republican Senator for Nevada Dean ...

9 Juli 38min