Telethon 2014: nkhondo ya mabanja powonekera

Mafunso ndi Laurence Tiennot-Herment, Purezidenti wa AFM-Téléthon

Pa nthawi ya Telethon 2014, Laurence Tiennot-Herment amayankha mafunso athu.

Kusindikiza kwa 28 kwa Telethon kudzachitika sabata ino, mutu wa kampeni yatsopano ndi chiyani?

Laurence Tiennot-Herment: kope latsopanoli likutsindika pakulimbana kwa tsiku ndi tsiku kwa mabanja ndi ana okhudzidwa ndi matenda osowa. Chaka chino, mabanja anayi a kazembe ali pachiwonetsero, ndipo kupyolera mwa iwo, matenda anayi osowa omwe amaperekedwa kwa anthu wamba.

Tifotokoza nkhani ya Juliette, wazaka 2, akudwala Fanconi anemia, osowa matenda yodziwika ndi chiopsezo pachimake khansa ya m'magazi ndi khansa 5 kuposa munthu wathanzi. Uwu udzakhala mwayi wolankhula za matendawa ndi zonse zomwe zimachitika chilengezochi chisanachitike kubanja.

Mudzapeza Lubin, wazaka 7, akudwala matenda a msana, kufooketsa komanso kupita patsogolo kwa matenda a neuromuscular zomwe zimayambitsa minofu atrophy. AFM idzafotokoza makamaka momwe zopereka za Telethon zimachepetsera ndikuthandizira zovuta za tsiku ndi tsiku za banja.

Kuti Ilan, wazaka 3, ndi chinthu chinanso. Ali ndi matenda a Sanfilippo, matenda osowa kwambiri apakati pa mitsempha. Pang’ono ndi pang’ono akhoza kutaya kuyenda, ukhondo ndi kulankhula ngati zim’siya. Pankhani iyi, kawirikawiri, chithandizo cha majini ndicho njira yokhayo yothetsera. AFM inathandizira kafukufuku ndi zopereka za 7 miliyoni za euro, ndipo kwa nthawi yoyamba, pa October 15, 2013, Ilan adatha kupindula ndi chithandizo cha gene therapy. Aka ndi koyamba kuyezetsa kwamtundu wamtunduwu mwa mwana.

Chomaliza koma osati chosafunikira, Mouna, yemwe ali ndi zaka 25 tsopano, ali ndi vuto losawona bwino, Leber's Amaurosis. Mawonekedwe ake ndi opapatiza kwambiri. Zopereka za telethon zidapangitsa kuti zithekenso, kulipirira kuyesa kwa gene therapy komwe Mouna adatenga nawo gawo pachipatala cha Nantes University.

Mukuganiza bwanji za chaka chatha?

LTH: Zotsatira za chaka ndi zabwino kwambiri. Pali mayesero ochulukirachulukira mu chithandizo cha majini mwa anthu. Chiyembekezo ndi chenicheni. Mu 2014, tidzakondwerera zaka 15 zakuchita bwino kwa ma gene therapy chifukwa cha Telethon. Ana ambiri athandizidwa ndi mankhwalawa, ndipo akuyenda bwino. Komanso ndi chiyembekezo chachikulu cha kafukufuku wamankhwala.

Pafupifupi ma euro 100 miliyoni amasonkhanitsidwa chaka chilichonse pa Telethon. Kodi ndalamazi zimagwiritsidwa ntchito bwanji pothandiza mabanja?

LTH: Choyamba, AFM Telethon imapangitsa kuti ndalama ndikufulumizitsa kafukufuku ndikuyika dzina pa mazana a matenda osowa. Kupita patsogolo kwa sayansi ndikopindulitsa kwa anthu ambiri, komanso ku matenda amtundu uliwonse komanso matenda ambiri. Bajeti yapachaka yoperekedwa pothandizira ndikuthandizira odwala ndi mabanja ikuyerekeza 35 miliyoni mayuro. Zonsezi, pafupifupi ntchito zachigawo za 25 zatsegulidwa ndipo zimadalira mwachindunji ndalama za Telethon. Chifukwa cha zopereka, ndizotheka kulipirira zosowa zina zamabanja monga chikuku kapena mwayi wa olumala m'moyo watsiku ndi tsiku.

Ndalama ina yofunika, kumanga midzi iwiri ya “Family Respite” ku France, zomwe zimalola osamalira mabanja kupuma. Pazonse, malo ogona asanu ndi atatu atsegulidwa ku Anger ndi 18 ku Jura. Ku Paris, ndalama zomwe adapeza zidapangitsa kuti atsegule maofesi olandirira alendo komanso nsanja zamafoni.

Kodi ndi zinthu ziti zimene zidzachitike m’kope latsopanoli?

Mlandu : Chaka chino, Garou ndiye wothandizira opareshoni yomwe idachitika ku Paris, amakhala kuchokera ku Champs de Mars, komanso nthawi imodzi panjira za TV yaku France komanso ku France konse. Chochitika china chachikulu, Lachisanu Disembala 5: Grand Relais, kuchokera ku Méribel kupita ku Eiffel Tower, akatswiri a mpira, biathlon, Paralympic masewera… Patsiku lililonse, yuro imodzi idzaperekedwa ku Telethon. Pomaliza, ndikukhala kumpoto kwa France nthawi ino, Njira ya Giants idzabweretsa gulu loyenda, Makamera a France Télévisions akukwera, omwe achoka ku Coudekerque-Nthambi Kumpoto ndipo adzafika ku Paris Loweruka 6 December nthawi ya 18pm Cholinga ndikusonkhanitsanso ma euro 30 miliyoni a zopereka monga chaka chatha.