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  • OP0278-PARE ‘THE HUT OF MAR...
    Geukens, J; Caeyers, N; De Pourcq, V

    Annals of the rheumatic diseases, 06/2024, Letnik: 83, Številka: Suppl 1
    Journal Article

    Background:In 2022 little Niene (11 today) gets the diagnosis of JIA. A big shock for the active family of five, who needs to learn all about this disease and its impact on not only Niene, but the whole family. Big sister Mare (13 today) soon felt she needed to do something to support her sister. Inspired by a book, she decided to build a treehouse in the garden and live in it for six months to raise awareness and funding for JIA.Objectives:To raise awareness for JIA. To raise funding for ORKA, the Flemish organisation for parents with children with JIA.Methods:The family started building the treehouse beginning of January 2023. They used recycled materials to make the whole thing also eco-friendly. With some creativity and the help of generous donators for the materials, the cabin was finished just in time for Mare to move in on the 16th of April. The cabin contained a bed and a desk. Mare allowed herself only in the house for eating and washing. Sleeping, studying and free time were spent in the treehouse. Belgian press was alerted and immediately jumped on the inspiring story. Mare got radio-, TV- and newspaper coverage right away. This led to a nice financial boost for the project from the start. Apart from living in the treehouse, Mare also sold self-grown plants such as tomatoes, homemade cookies, homemade earrings and had family and friends in her cabin or garden for a sleepover in exchange for a financial gift. On Sunday 15th of October ORKA, the Flemish organisation for parents with children with JIA, organised a wonderful closing event together with Mare and her family. Mare succeeded in living in the treehouse for six months! Again, the press covered the story on all possible channels.Results:As for awareness: Mare’s action was spot on. The press loved the idea of this selfless deed of a 13 year old girl who wanted to do something for her little sister. Press coverage was huge on all channels. People in Flanders have certainly heard about JIA now! As for funding: The original goal was to raise 5000 euro. This soon showed to be too modest, so the hope was to raise 10 000 euro. Finally, Mare succeeded in raising almost 11 000 euro for ORKA.Conclusion:Mare’s plan to live in a treehouse for six months was a brilliant way to draw attention of the general public to JIA and the impact the disease has on the child, but also the family, including brothers and sisters. Mare has given a big boost to ORKA, who will use the extra funding to inform parents of new JIA children, for the annual summer camp and for additional awareness campaigns.REFERENCES:NIL.Acknowledgements:NIL.Disclosure of Interests:None declared.