Sloane’s 1st ASO treatment

Sloane’s 1st ASO treatment

Hello KIF1A Families, We arrived in New York City on May 5th and got settled into our apartment then on Monday we dove into dose one prep. Our first week and a half looked looked like this: It was a long week with a lot of hours spent in the hospital and waiting rooms but…

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Antisense Makes Sense

Antisense Makes Sense

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…

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Sloane’s Journey with ASO Therapy

Sloane’s Journey with ASO Therapy

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…

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