The Readout Loud 386: The high stakes for Huntington's patients
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Jan 29, 2026 Lauren Holder, a caregiver, advocate, and host of Help for HD living with Huntington’s disease, speaks about the community’s reaction to UniQure’s gene therapy news. She discusses regulatory reversals, the push to petition the FDA, and the high stakes for access and mental-health fallout. The conversation centers on trial design debates and urgent planning for treatment pathways.
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Shock After Breakthrough Data
- Lauren describes the emotional high when UniQure reported a 75% slowing in Huntington's progression at three years.
- She and the community felt overwhelming hope mixed with cautious realism after the announcement.
Advocate With Urgency And Integrity
- Advocate with urgency but maintain scientific rigor and safety as nonnegotiable priorities.
- Lauren frames her advocacy motto as "urgency with integrity" for Huntington's disease.
Cognition Precedes Movement In HD
- Huntington's affects cognition and behavior long before obvious movements, and it's highly individualized.
- Early cognitive and executive dysfunction are now recognized as part of the disease, not precursors.