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Více než sto tisíc korun na boj s roztroušenou sklerózou Tisk E-mail
Úterý, 08 duben 2014

Tolik se podařilo vybrat Nadačnímu fondu IMPULS v rámci Maratonu MaRS.

V prvním březnovém týdnu proběhl v Sokolovně v pražských Průhonicích Maraton s roztroušenou sklerózou MaRS. Akce, do které se zapojilo dalších 10 regionů České republiky, byla pořádána Nadačním fondem IMPULS, který podporuje léčbu pacientů s roztroušenou sklerózou (RS). Výtěžek benefiční akce ve výši 144.044 Kč bude věnován na nákup rehabilitačních pomůcek. 
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INSPO 2014 Tisk E-mail
Středa, 19 březen 2014
V sobotu 15. března 2014 se uskutečnila konference INSPO v Kongresovém centru v Praze. Už po několikáté jsem se konference zúčastnila taky a musím říct, že poprvé jsem měla pocit, že informační technologie skutečně mohou pomáhat osobám se zdravotním postižením. A také Vám prozradím důvod. Konečně jsou osoby se zdravotním postižením považovány za lidi, konečně někoho zajímá, jak žijeme a že chceme od života víc.
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Derniéra putovní výstavy „Mám RS… No a co?!“ Tisk E-mail
Středa, 11 leden 2012

Dovolte mi, abych se zamyslel nad krátkou historií putovních výstav uměleckých děl lidí s RS po České republice

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Ples s Jardou jsem si ujít nenechala Tisk E-mail
Pondělí, 06 leden 2014
Text na pozvánce byl výmluvný: Dne 11. 5. 2013 se koná v KC Zahrada v Praze 4 společenský večer ke Světovému dni RS, nad kterým má záštitu paní poslankyně Lenka Kohoutová. Je spojen s oslavou významného životního jubilea ing. Jaroslava Ziky, čestného předsedy Rosky.
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Unie Roska ocenila pomoc lidem s RS Tisk E-mail
Čtvrtek, 05 prosinec 2013
U příležitosti oslav Světového dne roztroušené sklerózy 2013 ocenila Unie
Roska ty, kteří pomáhají všem lidem s tímto nelehkým onemocněním

Unie Roska ocenila

 
Máš jen jednu šanci Tisk E-mail
Středa, 11 leden 2012

Premiéra dokumentárního filmu, který zachycuje průběh unikátní expedice pacientů nemocných roztroušenou sklerózou na nejvyšší horu Afriky Kilimandžáro, proběhla v neděli 20. listopadu v Brně

Uskutečnila se v Bílém domě v sále Břetislava Bakaly.

17členná expedice, jejímiž členy bylo i 5 pacientek nemocných roztroušenou sklerózou, se na podzim roku 2010 vydala do Afriky, kde zdoláním vrcholu Kilimandžáro dokázala, že jít za svými sny má svůj význam. A že nevyléčitelnou nemocí život nekončí. Členkou expedice byla i pacientka na invalidním vozíku. Expedice byla dokonce první svého druhu na světě.

Strhující příběh vypovídá o cestě za hranice všedních dnů, překonávání limitů i zákeřné nemoci. Je také o objevování Afriky a setkání s dětmi ze slumu v Nairobi a návštěvě tamější školy, kterou provozuje česká humanitární organizace.

Výtěžek z filmu půjde na podporu nemocných roztroušenou sklerózou. Během premiéry vystoupla také zpěvačka Hana Robinson, která taktéž trpí RS. Premiéru moderovala Nora Janečková, první držitelka ceny Unie Roska za dobrovolnickou pomoc nemocným RS.

Trailer k filmu najdete zde:

www.facebook.com/photo.php?v=1771413321404&set=vb.138591042820075&type=2&theater

Režie, scénář: Hynek Bernard

Hudba: Hana Robinson

Účinkují: Expedice RS Kilimanjaro

Uvádí Creature films.

Vendula Plavcová

Foto: Petr Berák

 
Výstava Cesta za duhou 2011 Tisk E-mail
Úterý, 10 leden 2012

Byl 1. listopad, v parku se ozývaly hlasité údery do bubnů hudebníků z Marimba Live Drums. K těmto zvukům se dalo přiblížit cestičkou, podél které zářily plamínky svíček. Cestička nás zavedla až k osvětlené kavárně pavilonu Grébovka, kde právě začínala vernisáž výstavy Cesta za duhou.

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Nový trend v léčbě spasticity – Pumpy pro život Tisk E-mail
Úterý, 10 leden 2012

V průběhu listopadu a prosince, přesněji 7., 8. a 9. 11. a 7. 12. 2011, proběhly čtyři přednášky pro pacienty trpící spasticitou. Odborníci, kteří se zabývají moderní léčbou spasticity, tedy i léčbou pomocí baclofenové pumpy, vystoupili v Ostravě, Brně, Olomouci a Praze.

Hovořilo se nejen o účinné metodě léčby, ale také o zkušenostech pacientů, kteří léčbu podstoupili. Na přednáškách vystoupili pacienti paní Radmila Krčmářová a pan Martin Hanibal, kteří již implantaci pumpy úspěšně absolvovali, tudíž jejich zkušenosti a účast na těchto seminářích byly obzvláště cenné.

Spasticita představuje jeden z nejrozšířenějších symptomů poškození centrálního nervového systému a postihuje zejména lidi s roztroušenou sklerózou nebo pacienty, kteří ochrnuli po úrazu či prodělané mozkové příhodě. Jde o ztuhnutí svalstva, které bývá doprovázeno bolestmi a zhoršenou pohyblivostí, a tedy i sebeobsluhou. Právě tyto příznaky se daří snižovat díky baclofenové pumpě. Pumpa je pacientům implantována do podkoží na břiše a tenkou silikonovou hadičkou dávkuje lék proti spasticitě, baclofen, přímo k míše. Její výhodou je, že takto podávaný lék účinkuje už ve velmi nízkých dávkách a množství se vždy upraví přesně dle potřeb pacienta, nedochází proto k předávkování ani ke zbytečným nežádoucím účinkům.

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Ankaran 2011 Tisk E-mail
Pondělí, 24 říjen 2011

Dovolte mi, abych vám všem podal informaci o letošní rekondici ve slovinském Ankaranu

V lednu letošního roku jsem poslal oficiální dopis na vedení slovinské MS Society se žádostí o možnost uskutečnění rekondičního pobytu i pro rok 2011 pro členy Unie Roska. I přes urgence, že potřebujeme znát termín, abychom mohli dát nabídku mezi naše členy, jsme žádnou odpověď nedostali. A co se najednou stalo, dne 17. 8. 2011 jsem dostal e-mail, že máme rezervovány tři pokoje pro celkem 12 osob na termín od 25. 8. – 3. 9. a nastala otázka, co teď.
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9. národní konference Tisk E-mail
Pondělí, 24 říjen 2011

Vyvrcholením akcí konaných u příležitosti Národního dne roztroušené sklerózy v České republice byla dne 22. června Národní konference „Místo pro kvalitní život s roztroušenou sklerózou“

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