CNBC anchor Becky Quick has opened up about her daughter’s diagnosis with a rare genetic disorder, detailing the medical and emotional challenges faced. The experience led Quick to launch CNBC Cures, a dedicated initiative aimed at accelerating research and funding for rare diseases.
- Becky Quick’s daughter diagnosed with POLR3A-related Leukodystrophy, a rare condition affecting fewer than 1 in 100,000
- Diagnosis took 5.8 years on average from symptom onset to confirmation
- CNBC Cures launched in October 2025 with $2.3 million in initial funding
- Over $1.1 million allocated to three early-stage research grants by January 2026
- CNBC Cures has enrolled 432 patients in a global rare disease registry across 28 countries
- Partnerships underway with NIH, CHOP, and biotech firms to develop gene therapies by 2028
Becky Quick, lead anchor of CNBC’s Squawk Box, revealed in a recent public statement that her daughter was diagnosed with a rare neurodegenerative condition at age four, after years of unexplained developmental delays and seizures. The condition, identified as a variant of Leukodystrophy with a specific mutation in the POLR3A gene, affects fewer than 1 in 100,000 individuals globally, with only 200 known cases documented in medical literature as of 2025. Despite extensive testing across five specialized pediatric centers in the U.S., a definitive diagnosis was not confirmed until 2024, highlighting systemic gaps in rare disease diagnostics. The emotional toll on Quick and her family was profound, compounded by limited treatment options and a lack of targeted clinical trials. Her daughter currently receives palliative care and experimental therapies through off-label protocols, with no FDA-approved treatments available for her specific subtype. This personal struggle motivated Quick to establish CNBC Cures in October 2025, a non-profit initiative funded with $2.3 million in initial capital from private donors and corporate partners. The program has since committed $1.1 million to three early-stage research grants focused on POLR3A-related disorders and gene therapy development. CNBC Cures has also partnered with 12 academic medical centers, including the National Institutes of Health’s Undiagnosed Diseases Network and the Children’s Hospital of Philadelphia, to create a centralized data registry for rare disease patients. As of January 2026, the registry has enrolled 432 patients from 28 countries, significantly expanding the research pool. The initiative is also developing a public awareness campaign targeting healthcare providers to improve early detection rates, which currently average 5.8 years from symptom onset to diagnosis. The launch has drawn attention from biotech firms and philanthropists, with two new collaborations announced in December 2025. One partnership with a gene-editing startup aims to develop a CRISPR-based therapy by 2028, while another with a diagnostic imaging firm seeks to refine MRI biomarkers for early detection. Analysts note that initiatives like CNBC Cures address a critical gap: 80% of rare diseases lack any approved treatment, and only 5% of rare disease research receives government funding.