Okuqukethwe
- Ingxoxo noLaurence Tiennot-Herment, umongameli we-AFM-Téléthon
- Uhlelo lwe-28 lwe-Telethon luzokwenzeka kule mpelasonto, ithini ingqikithi yomkhankaso omusha?
- Ithini isivivinyo sakho sonyaka odlule?
- Cishe ama-euro ayizigidi eziyi-100 aqoqwa unyaka ngamunye ngesikhathi seTelethon. Le mali isetshenziswa kanjani ngempela ukusiza imindeni?
- Zizoba yini izehlakalo zalolu hlelo olusha?
Ingxoxo noLaurence Tiennot-Herment, umongameli we-AFM-Téléthon
Ngesikhathi se-Telethon 2014, uLaurence Tiennot-Herment uphendula imibuzo yethu.
Uhlelo lwe-28 lwe-Telethon luzokwenzeka kule mpelasonto, ithini ingqikithi yomkhankaso omusha?
U-Laurence Tiennot-Herment: lolu hlelo olusha luyagcizelela emzabalazweni wansuku zonke wemindeni kanye nezingane ezihlaselwe isifo esingajwayelekile. Kulo nyaka, imindeni emine yamanxusa ibhekwe ngabomvu, futhi ngayo, izifo ezine ezingavamile ezethulwa emphakathini jikelele.
Sizoyixoxa indaba ka UJuliette, oneminyaka emi-2 ubudala, ophethwe yi-Fanconi anemia, isifo esingavamile esibonakala ngengozi ye-leukemia eyingozi kanye nomdlavuza izikhathi ezi-5 ezinkulu kunomuntu onempilo. Leli kuzoba yithuba lokukhuluma ngesifo kanye nakho konke okwenzeka ngaphambi kwalesi simemezelo emndenini.
Uzothola U-Lubin, oneminyaka engu-7 ubudala, uhlushwa i-spinal muscular atrophy, isifo esiwohlozayo nesiqhubekayo se-neuromuscular okubangela ukonakala kwemisipha. I-AFM izochaza ikakhulukazi ukuthi iminikelo ye-Telethon inciphisa futhi isekele kanjani ubunzima bansuku zonke bomndeni.
Kuya U-Ilan, oneminyaka emi-3, usengokunye futhi. Unesifo sikaSanfilippo, isifo esingajwayelekile sesimiso sezinzwa esimaphakathi. Angase alahlekelwe ukuhamba kancane kancane, ukuhlanzeka nokukhuluma uma kungenziwanga lutho. Kulesi simo esiqondile, okungavamile kakhulu, ukwelashwa kwezakhi zofuzo kuwukuphela kwesixazululo. I-AFM yasiza ucwaningo ngomnikelo wama-euro ayizigidi ezingu-7, futhi ngokokuqala ngqa, ngo-Okthoba 15, 2013, u-Ilan wakwazi ukuzuza ekwelashweni kokwelashwa ngofuzo. Lesi isilingo sokuqala sokwelashwa kofuzo kwalolu hlobo enganeni.
Okokugcina, UMouna, oneminyaka engu-25 manje, unokuphazamiseka kokubona okungajwayelekile, i-Leber's Amaurosis. Umkhakha wakhe wokubona umncane kakhulu. Iminikelo ye-Telethon yenze kwaba nokwenzeka, futhi, ukuxhasa ngezimali ucwaningo lokwelapha ngezakhi zofuzo lapho i-Mouna ibambe iqhaza khona eSibhedlela sase-Nantes University.
Ithini isivivinyo sakho sonyaka odlule?
I-LTH: Imiphumela yonyaka mihle kakhulu. Ziyanda izivivinyo ekwelapheni ngezakhi zofuzo kubantu. Ithemba liyiqiniso. Ngo-2014, sizogubha iminyaka engu-15 yokwelashwa ngempumelelo kofuzo okuthuthukiswe ngenxa ye-Telethon. Inqwaba yezingane iselashwe ngale ndlela yokwelapha, futhi yenza kahle. Kuyithemba elikhulu futhi locwaningo lwezokwelapha.
Cishe ama-euro ayizigidi eziyi-100 aqoqwa unyaka ngamunye ngesikhathi seTelethon. Le mali isetshenziswa kanjani ngempela ukusiza imindeni?
I-LTH: Okokuqala nokubalulekile, i-AFM Telethon yenza kube nokwenzeka xhasa futhi usheshise ucwaningo futhi ubeke igama emakhulwini ezifo ezingavamile. Ukuthuthuka kwesayensi kunenzuzo enanini elikhulu kakhulu, kanye nezifo zofuzo kanye nezifo ezijwayelekile. Isabelomali sonyaka esinikelwe ekusizeni nasekwesekeni iziguli kanye nemindeni silinganiselwa ku-35 million euros. Sekukonke, cishe izinsiza zesifunda ezingama-25 zivuliwe futhi zincike ngqo kwizimali zeTelethon. Ngenxa yeminikelo, kuyenzeka ukuxhasa ngezimali izidingo ezithile zemindeni njengesihlalo esinamasondo noma ukufinyelela kwabakhubazekile empilweni yansuku zonke.
Okunye ukutshalwa kwezimali okubalulekile, ukwakhiwa kwemizana emibili “Yokuphefumula Komkhaya” eFrance, okuvumela abanakekeli bomndeni ukuba baphefumule. Sekukonke, sekuvulwe izindawo zokuhlala eziyisishiyagalombili e-Anger nase-18 e-Jura. EParis, izimali eziqoqwe zenza kwaba nokwenzeka ukuvula amahhovisi okwamukela izivakashi nezinkundla zocingo.
Zizoba yini izehlakalo zalolu hlelo olusha?
ICALA : Kulo nyaka, UGarou ungumxhasi wokuhlinzwa okuhlelwe eParis, bukhoma ku-Champs de Mars, futhi ngasikhathi sinye eziteshini ze-TV ze-TV kanye nakuyo yonke i-France. Omunye umcimbi omkhulu, ngoLwesihlanu ngoDisemba 5: I-Grand Relais, ukusuka eMéribel kuya e-Eiffel Tower, ompetha bebhola, i-biathlon, imidlalo yama-Paralympic… Ngokwehla ngakunye, kuzokhokhwa i-euro engu-1 kuTelethon. Ekugcineni, hlala usuka eNyakatho yeFrance ngalesi sikhathi, Umzila wamaGiants uzohlanganisa ikharavani ehambayo, Amakhamera e-France Télévisions agibele, azosuka e-Coudekerque-Branche eNyakatho futhi ezofika e-Paris ngoMgqibelo ziyisi-6 kuZibandlela ngo-18 ebusuku Inhloso ukuqoqa futhi ama-euro ayizigidi ezingu-30 eminikelo njengangonyaka odlule.