Founded
2017
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Portland
Finding a solution for PKAN | Spoonbill Foundation Finding a solution for PKAN Spoonbill Foundation and our sister organization Stichting Lepelaarwere founded with the goal to discover develop and deliver therapeutics for PKAN and all NBIA disorders in partnership with the NBIA community as swiftly as possible and at the lowest cost. We know PKAN. For 26 years we have cared for hundreds of people with PKAN hunted and found the causative gene discovered key pathologic and biochemical features of the disease engineered the best animal disease models and relentlessly pursued rational therapeutics with urgency and purpose. We are global leaders with a strong connection to the PKAN family community worldwide.
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Portland
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Simone
2025-10-28
"Thrilled to hear that Jackie Merlos, a mother from Portland, has been released from immigration detention after 4 long months! 🙌 Her reunion with her children is a testament to the power of community support and advocacy. ❤️ #GoodNews #FamilyReunion #CommunitySolidarity"
Portland mother detained at Canadian border released after 4 months in immigration detention
Oregon Live
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