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Výstava Poznejte Willíky v Poslanecké sněmovně

Datum: 27. 10. 2015 10.06 | Autor: - hk - | 25617× | Kategorie: Williamsův syndrom | Komentáře: 145

Tisková zpráva:

Bartoloměj a Kačenka. Na první pohled normální hravé a zvídavé děti. Oba ale trpí Williamsovým syndromem, genetickou poruchou, která vyžaduje celodenní péči. Že o této nemoci slyšíte poprvé? I to je bohužel možné, moc se o ní nemluví. Poslankyně Jana Pastuchová se to společně s nadačním fondem MA MA Foundation a Spolkem pro Williamsův syndrom rozhodla změnit.

Výstava fotografií „Poznejte Willíky aneb děti a lidé s Williamsovým syndromem“ putovala v létě po Libereckém kraji. V úterý 15. září Jana Pastuchová zahájila vernisáž výstavy fotografií v Praze, přímo v poslanecké sněmovně. A pozvala si k tomu řadu pomocníků. Do sněmovny přijela Kačenka a Bárt, který s sebou vzal i svoje spolužáky z 2.A ZŠ Sokolovská z Liberce.

Byla bych moc ráda, kdyby se Williamsův syndrom dostal více do povědomí lidí. Lidé, kteří mají tuto nemoc, mohou žít plnohodnotným životem, ale potřebují naši pomoc. Nemyslím tím pouze peníze, ale především vstřícné a kvalitní zákony, dostupné pedagogické asistenty, příležitosti pro trávení volného času, pomocnou ruku, když ji potřebují,“ říká poslankyně Jana Pastuchová.

Williamsův syndrom se vyskytuje u jednoho z 20 tisíc novorozenců. Mezi jeho příznaky patří nejčastěji charakteristický vzhled, postižení srdce či velkých cév a různé odchylky psychomotorického vývoje. Zároveň však lidé s Williamsovým syndromem mohou dělat mnoho věcí jako jejich zdraví vrstevníci. Nejen to zachytila na svých fotografiích Dagmar Petrásková. Výstava v poslanecké sněmovně potrvá do pátku 18. září.

Více o Williamsovu syndromu najdete ZDE.


Zdroj: http://www.anobudelip.cz/cs/o-nas/aktuality/tiskove-zpravy/willici-zamirili-za-janou-pastuchovou-do-poslanecke-snemovny-23488.shtml




Komentáře:

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    Telework is definitely taking more of a front seat in the modern Global economy. We still see some level of management hesitation due to lack of control, but as more and more organizations roll out successful telework programs, proving that it is possible, I would anticipate a pretty dramatic increase in the number of organizations offering telework programs.



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    The hatchlings have been banded and soon they’ll be venturing outside the nest to test their wings and inspect the world outside the nesting box (always nerve wracking) The camera has been refocused so that we can see more of the ledge to help us, and you, keep a closer eye on their activity.



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    O novo museu dos coches é um horror já para não falar de toda a polémica que envolveu a construção desse novo museu. E agora, estou para ver qual o futuro reservado para o Aqueduto das Águas livres!



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    Oj, jag har råkat skicka in mitt bidrag till temat Varsågod och sitt, fast det var tänkt till I luften. Ooops! Kan du radera det?Kramar Kattis



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  81. VtlPJJSum20. 9. 2016 12.23

    My mum really likes lime marmalade so definately making a batch of it. However, after reading a couple of other daring baker’s posts, the limes in the tian don’t seem to be a big hit so I will skip making it with limes.



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  83. 1oxXqpnaXaKM23. 9. 2016 20.19

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  85. Jgsgx61A624. 9. 2016 10.06

    Because of the 5 hours’ flight, climate and geography you tend to feel like you are not in US anymore. As soon as we landed in Hilo and even before the airplane was taxied, I heard the woman sitting behind us screaming ” are you f….g crazy” to her husband over the phone because he was apparently getting late to pick her up. That just reminded me where we were.



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  87. 9L7m5mRvuxFN3. 10. 2016 6.06

    Úgy gondolom ez nem kimondottan Orbán Viktorra vonatkozik csak, hanem egész Magyarországra. Megvonni a szavazati jogokat kollektívan? Akkor mégis csak "mazsolák" vagyunk? Heller Ágnes pedig nem az ellenzékhez tartozik ö egészen más tészta, legalább is politikai értelemben, amit pedig az EU-ba terjeszt rólunk ( a hasonszőrűekkel együtt, az tömör hazugság áradat, az egyáltalán nem érdekel.



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  88. Pn0ZpD3s7so9. 10. 2016 12.50

    Hey there,My daughter,Katie Savannah, attended NC Governor’s School last summer and had a ball every minute of it . Being in a think tank with others who were so invested in learning from really great faculty made for time well spent . She actually met her beau there and they are still dating long distance.She now feels totally confident about starting college this fall after her “practice college”. It was also great practice for my heart .Enjoy your three week visit !Victoria Amos



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  89. 4tmTv66979. 10. 2016 16.50

    Filme legal, mostra uma realidade um pouco diferente do que estamos acostumador a ver em nosso país, e em certos momentos nos ajuda a mudar alguns pensamentosyes filmes nota 10 como sempre, obrigado! Nota: 9



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  90. 4QhgP3Maaf1W18. 10. 2016 4.54

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  92. hnaiTaGvcu26. 10. 2016 12.07

    That hits the target perfectly. Thanks!



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  93. iFoiQVSI626. 10. 2016 12.08

    COMANDANTE MELK disse:Senhores,o “MOPA´´ tá de “olho´´ neste cidadão Janio de Freitas…E não apenas nele, mas em muitos outros quinta coluna instalados na imprensa nacional…



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  96. 6OYqap9O2. 11. 2016 2.46

    Con lo que me gustan las alubias, y no se me habría ocurrido nunca que se podía hacer un pastel, y menos con esta pinta tan rica!!!! me lo llevo ...bsts. maite



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  97. 0Bdhe949Iez3. 11. 2016 18.18

    Grønt er ein fin farge, kjøpte meg faktisk nokre grøne telysestakar på -nille før helga. :)Og no når eg har fått meg ny seksjon, så ser eg at i den må eg bruke litt skarpare fargar enn eg har turd å bruke tidlegare.



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  98. 8EszYqg9GC5. 11. 2016 8.30

    Allah Allah herkeste kendini üçbeş video izledi takip etti diye buranın efendisi falan zannetmeye başladı lan. Sen kimsinki sana izah etmek mecburiyetindeler efendi?Mecburiyette bulunması gereken varsa o da senin adam olman mecburiyetin var. ADAM OL.



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  99. naQ69nIrSYX8. 11. 2016 10.12

    NIe pamietam, kiedy ostatni raz bylam na prawdziwym ognisku w gorach...tzn bylo to tak dawno, ze wstyd sie przyznawac...wtedy w bacowce kupowalo sie wylacznie owcze oscypki, bez dodatku mleka krowiego...szkoda, ze konczy sie sezon na oscypki...ale z drugiej strony dobrze, ze mam jeden w zamrazalniku, co to go sobie kupilam w lipcu jeszcze...nb...wlasnie dzisiaj pisalam krotki post o takich prostych jak cep daniach z jednym albo dowma skladnikami...pozdrawiam i zmykam do lozka.



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  100. SDOq6ggTnC9. 11. 2016 2.48

    Non ho pregiudizi verso Mughini ma il Mughini di oggi è un fenomeno da baraccone. sebbene esprima opinioni ben argomentate e talvolta divertenti, per me vale sgarbi, diaco, paragone, magalli, selvaggia lucarelli. conosco il suo passato ma il passato e’ passato e il presente e’vuoto folclore da paroliere pop



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  104. 1Ljv33oM28. 11. 2016 1.46

    Gullette’s mother placed her in an untenable position. To even consider the life of the murdered sibling would be to condemn the mother. So Gullette is stuck having to rejoice that a sibling was put to death to better her life.Now, it could be that she really is so lacking in a conscience that she really is able to rejoice in a sibling’s brutal death because she personally benefitted materially from it. I just think it’s more likely that she had to keep the focus on what her mother intended — a better life for the family — and never allow herself to think about the price her sibling paid.



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  105. 2p0NJC0p28. 11. 2016 11.27

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  106. coFJOwoqRT28. 11. 2016 23.01

    Para comérselo en un momento de lo apetitoso que se ve.La salsa esmeralda es para mi una novedad, pero si congela bien es mejor haceerla en cantidad.Te iba a preguntar si el huevo lo hacías con aro, pero ya veo que si, es que está perfecto.Besos.



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  107. e2gAvhXJXqHb30. 11. 2016 16.37

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  108. 6FTU48ohS1. 12. 2016 18.32

    Pay by the hour. Sha has to be abel to have staedy income for her bills. If her incone chonged every time, she would get frastrated and quat.



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  109. gF6WCx3iBuDU10. 12. 2016 0.42

    Hello, I can’t talk with a SEX MANIAC!!!, but I can pray for you!!! you can dream the little shit of humanity, like cumbas, thanks,bye. thanks, bye.



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  110. MBI2hfZ6w15. 12. 2016 13.46

    It may (or probably will) depend on certain state and county laws, however I have very little knowledge on US legislation. The best thing to do is contact the local department that deals with such things (the phonebook will come in handy).To be honest I’d be more concerned for the fishes welfare, as they might not be being cared for properly.Been there, done that.



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  111. aRWQPp6ieA17. 12. 2016 18.20

    plenty of skilled artisans who do a single task better than I ever can. I have no problem serving a crusty baguette that comes from someone else’s oven or a fancy layered dessert that I didn’t make because, after all, guests don’t really



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  112. q7JdTeOk5Pya25. 12. 2016 14.53

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  113. KKVKpRaI28. 12. 2016 7.44

    I am not Star Jones"So I ask that you not diminish the appeal of black women to non-black men -- it's churlish and unnecessary."I'm not diminishing anything dear.Just dealing with reality.I personally would love to see more black women dating outside the race.I'm not threatened by that in the least.There would be far less angry and deprived sistas in this world and that would make life better for everybody.



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  114. gF9COV4V9BY030. 12. 2016 10.55

    Um…do I really need to answer this question?If anyone gets their knickers in a twist about your blog just send them over to mine and they will say, “Wow. Thanks for the restraint, Camille! You are awesome!”



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  115. ySQsBKdvOE1. 1. 2017 21.44

    Antonmar sto schiattando dalla curiosità da quando hai cambiato Avatar…..Ma quelle due palle gialle, sono…. cavoletti di Bruxelles??e sopratutto quello nascosto dietro, sei tu ???????



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  116. uxa9QZyE15. 1. 2017 0.27

    Thank you both for the comment!! I visited your blogs! But Eva Ana Kazic I can't comment in your posts..why? Have a beautiful Saturday night!



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  117. bGZqjBl4Kd18. 1. 2017 4.34

    Les exigences de Wajda sont analogues à celles de Gracq. Hélas pour le polonais, si la littérature peut encore être de l’artisanat, le cinéma est aujourd’hui avant tout une industrie.



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  119. PBstRdMisyXd26. 1. 2017 15.50

    I love it how Israelis feel the desperate need to open fire on their staunch supporter (and bankroller) the United States with a proverbial Uzi if that’s what it takes to justify their own reliance on terrorism.



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  120. 3ejNlaQN28. 1. 2017 23.00

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