Who we are?
The non-profit organization dedicated to drive first-ever treatment development for ultra-rare neurodevelopmental disorder (Development and Epileptic Encephalopathy 66) caused by mutation in PACS2 gene. We strive to enhance the quality of life for affected patients and their families. We anchor our efforts on interdisciplinary and international cooperation, buidling and fortifying patient-scientists-clinicists partnership and sharing experience with other research foundations.
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Currently run RESEARCH: LINK
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Privately we are parents of Lena who is impacted by the mutation. You can follow us on Instagram @misjalek.
The foundation is registered in Warsaw, Poland. Nevertheless, we operate worldwide for all patients affected by the disorder.
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Registry information and annual statement:
R​egistered in Warsaw, Poland
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Polish National Registry (Krajowy Rejestr Sadowy) number: 0000970620
Tax Identification Number (NIP): ​5213967421
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Board:
Malgorzata Kosla - President
Piotr Kosla - Vice-President
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Supervisory Board:
Justyna Karwat - Chairman & the parent of a child affected by PACS2 syndrome
Zbigniew Karwat - the parent of a child affected by PACS2 syndrome
Dominik Cysewski, PhD - Vice-Chairman & the neurobiologist, proteomics expert
Kacper Lukasiewicz - the neurobiologist, animal models expert
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Scientific Board: LINK​
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Foundation statute (Polish only) - updated in August 2024:
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Privacy policy:
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Annual statements:
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2022 & 2023 (Financial statements, simplified, in USD - English):
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2023 (Financial statements - official documents in PLN in Polish):
* percentage of revenue invested in research: 98%
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2022 (Financial statements + Activities' Report for Polish Ministry of Health - official documents in PLN in Polish):
* percentage of revenue invested in research: 94%
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