Sally Jackson is a former actress, cookbook co-author, and mother of Susannah. In this Realities of the Nano-rare episode, Sally lets us into her family’s bubble, speaking candidly about the deeply complex and often terrifying realities of navigating KIF1A-associated neurological disorder. From helping Susannah's sibling understand the harsh consequences of her disease to confronting distress, uncertainty, and the profound unfairness of it all, Sally shares the difficult truths her family has faced and continues to carry and fight through. On this episode: 4:00 – Sally and her husband's story first began in a college acting class 9:55 – Forming a career alongside celebrity chef Bobby Flay 13:30 – Family of four including Nat and Susannah 16:55 – Early abnormalities and a diagnosis initially withheld from the family 22:50 – The fight for Susannah and others with KIF1A post-diagnosis 29:24 – Dealing with the seriousness of a degenerative condition while trying to live a normal life 34:00 – Enduring relentless seizures 38:31 – The reality that not even doctors know what's best and often experiment to attempt to relieve rare disease symptoms, and the unfairness of rare disease 45:00 – Informing siblings about the severity and consequences of rare disease 57:00 – Changing the course of their life to advocate to the fullest extent 1:02:25 – After the long fight, there was an ASO 1:07:30 – After years of treatment, Susannah had to stop, a crushing blow that was followed by worsening symptoms before once again resuming treatments Links:

Nano-rare Patient Colloquium 2026

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