Today is Huntington’s Disease awareness day. A family history of the disease prompted war correspondent Charles Sabine to get tested, and he now campaigns to challenge stigma and work towards a treatment
Charles Sabine (left) with his brother John Sabine before John passed away of Huntington’s disease in 2019. Photo: Martin Sølyst
In January 1994, 34-year-old Emmy-winning NBC war correspondent Charles Sabine was about to fly to Prague to cover a story when he received a phone call that would change his life. His father, John, had tested positive for the gene responsible for Huntington’s disease (HD), meaning Sabine and his older brother, also called John, had a 50-50 chance of inheriting the gene and developing Huntington’s disease, a degenerative neurological disorder for which there is no cure.
According to the HD Association of Ireland, “HD is caused by an alteration in the huntingtin (HTT) gene on chromosome 4”. This alteration results in a “harmful protein called mutant huntingtin” which causes cells in the brain to die, affecting “movement, thinking and emotion”, with symptoms worsening over time. It generally affects people between the ages of 35 to 50 but can occur later, or in the case of juvenile Huntington’s, earlier.
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