Enterprises of Great Pitch and Moment

Enterprises of Great Pitch and Moment

By Luke RosenJuly 11, 2019 Before all this happened, I wrote plays. Before Susannah was diagnosed with a rare neurodegenerative disease; before we started the foundation; before I knew about motor proteins and phenotypes; before special needs; before rare disease policy; before biotech; before that moment in the hospital elevator when everything changed, one of…

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Insights from RARE on the Road

Insights from RARE on the Road

KIF1A mom Jenni shares her insights after attending RARE on the Road, a Rare Disease Leadership Tour hosted by The EveryLife Foundation and Global Genes. At this workshop, Jenni connected with fellow rare disease advocates and found renewed hope for the future of the KIF1A community.

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Today Is A Good Day

Today Is A Good Day

By Charisma FreemanOriginally published May 13, 2019, in FOCUS + Fragile Kids ViewFinder Newsletter KIF1A mom Charisma reflects on the turmoil she experienced after learning her 7-year-old son had been misdiagnosed with cerebral palsy, and how she found strength in her new family—the KIF1A community—to fight for a brighter future.

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Meet the New KIF1A.ORG

Meet the New KIF1A.ORG

Today we relaunched our home at KIF1A.ORG. This new digital platform makes it easier for the global KIF1A community of families, researchers, clinicians, partners and supporters to advance our mission: Improve the lives of those affected by KIF1A Associated Neurological Disorder and accelerate research to find a cure. When KIF1A.ORG was established in 2017, there were fewer than…

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In Memory of Eleonora – When a Superhero Falls

In Memory of Eleonora – When a Superhero Falls

When a Superhero Falls By Ricardinho Qvistlund, Eleonora’s father Originally published April 11, 2019 (Translated from Swedish) At this night two months ago, you started your way towards the end, the acute condition was too tough for your body and the doctor declared that nothing more was to be done. Mom & Dad took the hardest…

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