Today in Focus My dad, his ‘incurable’ disease, and hope at last
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Oct 6, 2025 Josh Halliday, a Guardian journalist, shares his family's experience with Huntington's disease, shedding light on the emotional toll it has taken. He recounts the journey of learning about his father's diagnosis and the challenges it presented to their family, including caregiving struggles. Discussing genetic testing, Josh reveals how becoming a father influenced his decision to get tested, ultimately leading to the relief of receiving a negative result. They also explore groundbreaking gene therapy that shows promising results in slowing disease progression.
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Huntington's Harrowing Course And New Hope
- Huntington's disease is a rare inherited neurodegenerative disorder that attacks the whole nervous system and progressively robs people of communication and mobility.
- The episode frames a major trial result as the first-ever treatment showing a dramatic slowing of disease progression, offering renewed hope.
Remembering Phil's Ordinary Joys
- Josh describes his dad Phil as a hardworking, playful Leeds United–loving postman who loved bacon sandwiches and painting.
- These intimate details show the human life Huntington's disease has erased beyond clinical symptoms.
Public Humiliation And Lost Liberties
- Josh recounts a humiliating pub incident where staff assumed his dad was drunk because of slurred speech and involuntary movements.
- He says moments like losing a driving licence and being barred from normal life illustrate how Huntington's strips dignity and freedoms.