Category: KAND Trials and Treatments

By Luke Rosen, Published on Medium Dec 21, 2022 Our daughter is a superhero. She is a pioneer, and she is changing. Susannah has a rare neurodegenerative condition called KIF1A Associated Neurological Disorder, or KAND. She joins a handful of people in a united community each with very real desperation and hope. Our collective hope is…

Sloane is an adorable 3 year old with KAND. She is scheduled to be the 2nd patient in the world to receive ASO therapy for KAND. Her mother, Megan, has offered to share their experience and journey with everyone to help us understand the process and to share in their hopes, fears, challenges, and successes…