With great pleasure we would like to inform You, that the Founders of Polish CCHS Foundation “Lift the curse”, Tomasz Śliwiński and Magda Hueckel, received the prestigious EURORDIS Black Pearl Award 2020 in the category Visual and Audio Media.
“The Visual and Audio Media Award recognises Tomasz Śliwiński and Magda Hueckel’s important and impactful documentary film, ‘Our Curse’, telling the story of the first six months of their son Leo’s life with Congenital Central Hypoventilation Syndrome (CCHS). As a result of the discussion raised by this powerful and emotional film, donations have increased across the world for research into CCHS, new medical devices have already come to market, and the families of patients like Leo feel much less alone in their experiences. ‘Our Curse’ has deservedly received global critical acclaim, and this award recognises their powerful talent and ability to highlight the needs of people living with a rare disease to a wider audience, reaching beyond the rare disease community.”
Thank you EURORDIS for this award!!!
