Ko Te Tangata kei Muri o te Wero ALS Kei Te Puku Ki Nga Pire Hauora

Toka Te Manawa

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Ko te kaitakaro poipoipo o mua o te Kareti o Boston, a Pete Frates, i kitea he ALS (amyotrophic lateral sclerosis), e mohiotia ana ko te mate a Lou Gehrig, i te tau 2012. E rua tau i muri mai, ka puta tana whakaaro ki te kohi moni mo te mate ma te hanga wero a te ALS ka whai ake. ka noho hei kaupapa papaho pāpori.

Heoi i tenei ra, i te mea kei te noho a Frates ki runga i te oranga i te kainga, kei te uaua haere tona whanau ki te utu i te $85,000, $95,000 ranei ia marama e ora ai ia. "Ka pakaru tetahi whanau na tenei," ko te papa o Frates, a John, i kii ki a CNN hononga WBZ. "I muri i nga tau e 2 me te hawhe o tenei momo whakapaunga, kua kore rawa e tau mo tatou. Kare e taea e tatou te utu."

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Ko te kaupapa o te wero ALS he maamaa noa: ka makahia e te tangata tetahi peere o te wai-huka-makariri ki runga i tona mahunga ka whakairi katoa i runga i nga papanga pāpori. Na, ka wero ratou i o hoa me te whanau ki te mahi pera me te koha moni ki te ALS Association. (E Paa ana: Ko a maatau 7 Tino rongonui i eke ki te wero ALS Ice Bucket Challenge)

I roto i nga wiki e waru, neke atu i te 115 miriona taara i kohia e te whakaaro mohio a Frates na te 17 miriona taangata i uru mai. I tera tau, i kii te AlS Association ko nga takoha i awhina i a raatau ki te ID i tetahi ira kawenga mo te tahumaero e kore ai te iwi e kaha ki te whakahaere i nga nekehanga o te uaua, ka mutu ka kore e taea te kai, te korero, te hikoi, ka mutu te manawa.

Ehara ko tera anake engari i te timatanga o tenei marama kua puta te korero a te FDA ka waatea mai he rongoa hou hei whakaora i te ALS-ko te waahanga rongoa hou tuatahi e waatea ana i roto i te rua tekau tau. Heoi, he uaua ki te korero mena ka awhina tenei kitenga ki a Frates i te waa. Ko tetahi o nga kaitautoko o te wero, ko Anthony Senerchia, 46 ona tau, i mate i te mutunga o Noema 2017 whai muri i te pakanga 14-tau ki tenei mate.

Ahakoa te utu mo te $3,000 ia ra kia ora ai ia, kare te wahine a Frates a Julie i whakaae ki te neke i tana tane ki tetahi whare, ahakoa he iti ake te utu mo te whanau. "Kei te hiahia noa maua ki te pupuri i a ia i te kaainga me tana whanau," tana kii ki a WBZ, me te kii ko te noho taima me tana tamahine 2-tau te mea iti nei e kaha tonu ana a Frates ki te whawhai mo tona oranga.

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Inaianei kei te toro atu ano te whanau o Frates ki te marea ma te hanga putea hou ma te ALS Association hei awhina i nga whanau penei i a Pete ki te pupuri i o raatau hoa aroha ki te kainga. I tapaina ko te Initiative Care Health Initiative, ko tana whainga kia eke ki te $ 1 miriona, ana ka kohi putea i te Pipiri 5. Haere ki te AlS Association mo te roanga atu o nga korero.

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