Earlier this month, I read something in the Amyloidosis News Today newsletter that rekindled my curiosity about the investigational gene-editing therapy nexiguran ziclumeran (nex-z).
Heart to Heart Connection – Jade River
Jade River was born and raised in Taiwan and has lived in the United States since 2009. Her mother was diagnosed with cardiac amyloidosis in 2025, and the hereditary type was later confirmed. Jade underwent genetic testing, which confirmed she also carries the transthyretin gene mutation. She lives in New York and is an amateur potter.
My mom has never seen a neurologist, although she has a neurosurgeon who has been treating her spinal stenosis. She underwent spinal decompression surgery two years ago, a year before her diagnosis of hereditary transthyretin amyloidosis with cardiomyopathy (hATTR-CM). It was only after that diagnosis that we realized her…
