Mukati
- Hurukuro naLaurence Tiennot-Herment, mutungamiri weAFM-Téléthon
- Iyo 28th edition yeTelethon ichaitika vhiki ino, ndeipi dingindira remushandirapamwe mutsva?
- Ndeipi ongororo yako yegore rapfuura?
- Anenge 100 miriyoni euros inounganidzwa gore rega rega panguva yeTelethon. Mari iyi inoshandiswa sei chaizvo kubatsira mhuri?
- Zvii zvichange zvichiitika muichi chinyorwa chitsva?
Hurukuro naLaurence Tiennot-Herment, mutungamiri weAFM-Téléthon
Pachiitiko cheTelethon 2014, Laurence Tiennot-Herment anopindura mibvunzo yedu.
Iyo 28th edition yeTelethon ichaitika vhiki ino, ndeipi dingindira remushandirapamwe mutsva?
Laurence Tiennot-Herment: chinyorwa chitsva ichi chinosimbisa pakutambudzika kwezuva nezuva kwemhuri nevana vanobatwa nechirwere chisingawanzoitiki. Gore rino, mhuri ina dzevamiriri dziri mushishi, uye kuburikidza navo, zvirwere zvina zvisingawanzooneki zvinoratidzwa kune veruzhinji.
Tichataura nyaya ya Juliette, ane makore maviri, achitambura neFanconi anemia, Chirwere chisingawanikwe chinoratidzwa nenjodzi yeacute leukemia nekenza kashanu kupfuura mumunhu ane hutano. Uyu uchave mukana wekutaura nezve chirwere uye zvese zvinoitika pamberi pechiziviso ichi kumhuri.
Uchazviwana Lubin, ane makore manomwe, achitambura nepinal muscular atrophy, inopedza simba uye inofambira mberi neuromuscular chirwere. izvo zvinokonzera tsandanyama atrophy. AFM ichatsanangura kunyanya kuti zvipo zveTelethon zvinoderedza sei uye zvinotsigira matambudziko ezuva nezuva emhuri.
To Ilan, ane makore matatu, chimwe chinhu zvakare. Ane chirwere cheSanfilippo, chirwere chisingawanzoitiki chepakati tsinga. Anogona zvishoma nezvishoma kurasikirwa nekufamba, kuchena uye kutaura kana akasiyiwa asina kudzorwa. Munyaya iyi chaiyo, isingawanzoitiki, kurapwa kwejeni ndiyo chete mhinduro. AFM yakabatsira kutsvagisa nemupiro wemamiriyoni manomwe emaeuro, uye kekutanga, musi wa7 Gumiguru 15, Ilan akakwanisa kubatsirwa nemishonga yemagene therapy. Aka ndekekutanga kuyedza gene therapy yerudzi rwayo mumwana.
Kugumisira asi kusiri kupedzisira, Mouna, uyo ane makore makumi maviri nemashanu zvino, ane chirwere chisingawanzooneki, Leber's Amaurosis. Munda wake wekuona wakamanikana kwazvo. Mipiro yeTelethon yakaita kuti zvikwanisike, zvakare, kupa mari muyedzo yekurapa majini umo Mouna akatora chikamu paNantes University Hospital.
Ndeipi ongororo yako yegore rapfuura?
LTH: Migumisiro yegore yakanaka zvikuru. Kune miyedzo yakawanda uye yakawanda mukurapa kwemajini muvanhu. Tariro ndeyechokwadi. Muna 2014, tichapemberera makore gumi nemashanu ekubudirira gene therapy yakagadziridzwa nekuda kweTelethon. Vana vakawanda vakarapwa nemishonga iyi, uye vari kuita zvakanaka. Itariro huruwo yekutsvakurudza kwezvokurapa.
Anenge 100 miriyoni euros inounganidzwa gore rega rega panguva yeTelethon. Mari iyi inoshandiswa sei chaizvo kubatsira mhuri?
LTH: Chekutanga uye chakakosha, iyo AFM Telethon inoita kuti zvikwanise mari uye nekumhanyisa kutsvagisa uye kuisa zita pamazana ezvirwere zvisingawanzo. Kufambira mberi kwesainzi kunobatsira kune huwandu hukuru, pamwe nezvirwere zvemajini sezvirwere zvakajairika. Bhajeti yepagore yakapihwa kubatsira nekutsigira varwere nemhuri inofungidzirwa kusvika 35 miriyoni euros. Mune ese, angangoita makumi maviri neshanu masevhisi edunhu akavhurwa uye anovimba zvakananga nemari yeTelethon. Nekuda kwezvipo, zvinokwanisika kupa mari chaiyo zvimwe zvinodiwa nemhuri senge wiricheya kana kuwana vakaremara muhupenyu hwemazuva ese.
Imwe mari yakakosha, kuvakwa kwemisha miviri ye“Family Respite” muFrance, izvo zvinobvumira vachengeti vemhuri kufema. Pamwe chete, nzvimbo dzekugara sere dzakavhurwa muHasha uye 18 muJura. MuParis, mari yakaunganidzwa yakaita kuti zvikwanise kuvhura mahofisi ekugamuchira vanhu uye mapuratifomu enhare.
Zvii zvichange zvichiitika muichi chinyorwa chitsva?
MUEDZO : Gore rino, Garou ndiye mubatsiri wekuvhiya kwakarongwa muParis, anogara kubva kuChamps de Mars, uye panguva imwe chete paFrance Terevhizheni TV chiteshi uye muFrance yese. Chimwe chiitiko chikuru, Chishanu Zvita 5: Iyo Grand Relais, kubva kuMéribel kuenda kuEiffel Tower, shasha dzenhabvu, biathlon, Paralympic games… Pakudzika kwega kwega, 1 euro ichabhadharwa kuTelethon. Pakupedzisira, gara kubva kuchamhembe kweFrance panguva ino, Nzira yeGiants ichaunza pamwe chete karavhani inofamba, France Télévisions makamera ari muchikepe, ayo achasiya Coudekerque-Bazi kuchamhembe uye achasvika muParis neMugovera 6 Zvita na18 pm Chinangwa ndechekuunganidza zvakare makumi matatu emamiriyoni euros ezvipo segore rapfuura.