Perekani Chithandizo Chake Chamankhwala ndi Kupanga Dziko Kukhala Malo Abwinopo
Ndikukayikira kutcha James (Jamie) Heywood chinthu chachikulu. Pambuyo pake, tikudziwa kuti amodzi okhawo omwe ali kunja uko ndi Michael Jordan (yemwe angakhoze kuwuluka) ndi Dos Equis '"Munthu Wopindulitsa Kwambiri Padziko Lapansi" ("khalani ndi ludzu abwenzi anga"). Komabe, maziko onse a Heywood akufuula kwambiri. Pamene mchimwene wake Stefano, yemwe anali ndi mbiri yonse, anali wozizira kwambiri - anapeza kuti ali ndi hellacious amyotrophic lateral sclerosis mu 1998, Heywood ndi banja lake anagwidwa ndi tsoka losaneneka.
M'malo molira maliro ake ndi kuponyera pangodya, mu 1999, Heywood adalumikizana ndi abwenzi ndi achibale kuti akhazikitse ALS Therapy Development Institute, kampani yosayendetsa biotech yomwe ili ndi cholinga chosagonjetsa ALS.
Mu 2004, James Heywood anakhazikitsanso OdwalaLikeMe, kampani yomwe imayankha komanso imagawana nzeru zachipatala kwa anthu omwe ali ndi matenda osaphatikizapo kuti asathandize odwala ena okha komanso kuti amvetsetse chithandizo cha matenda ndi chithandizo kuti adziwe kafukufuku wamtsogolo. Pakati pa zoyesayesazi, Heywood akudziwa bwino masamu ndi mapulogalamu ake komanso chifundo cha onse omwe akudwala matenda aakulu.
OdwalaMasiku Omwe Ndi Olekanitsa Kugonjetsa
M'chaka cha 2008, Heywood ndi anzake adayamba kufotokoza mwadzidzidzi kutulukira kwadzidzidzi: Zofufuza zambiri za ALS zofufuza nyama zomwe zimayambitsa ziyeso zaumunthu zinali zopanda phindu komanso zosafunikira.
(Zomwe zikutanthawuza ziwerengero zazomwe zikutanthauza kuti pali zina zomwe sizingakhale zowonjezereka. Mwachidziŵikire, Heywood anasonyeza kuti zoposa theka la kufufuza kwa sayansi pa ALS zinali zolakwika.)
Zomwe a Heywood anapeza zinapezekanso zambiri - kuphatikizapo kufotokozera mu Chilengedwe - koma pang'ono. Nthaŵi zambiri zimachitika, mabungwe ochiritsira azinthu sanasinthe kwenikweni.
Pambuyo potsata izi, Heywood adziyika yekha ngati chiwombankhanga pa ntchito yowerengera nkhani yake yokhudza kukhala ndi matenda osatha ndikugwiritsa ntchito deta iyi ku chipatala ndi kafukufuku wabwino.
"Mukayang'ana amyotrophic lateral sclerosis, multiple sclerosis , depression kapena idiopathic pulmonary fibrosis," akutero Heywood. "Zomwe zimakhalira kukhala ndi matendawa ndizofunika kwambiri pa matendawa. Zomwe timasonkhanitsa ndizofunikira zomwe odwala omwe ayenera kudziyang'anira okha, [zofunikira zomwe amathandiza kuchipatala] choti achite Chotsatira pa chisamaliro, ndipo wofufuzirayo awonetse ngati mankhwalawa ndi othandiza pa matendawa. Ndipo timachita zonsezi pogwiritsa ntchito mawu ovuta komanso mawu omwe amamvetsetsa bwino. "
Mlanduwu: Ndinalemba nkhani yokhudzana ndi mapulaneti a idiopathic pulmonary fibrosis . Jamie amawerenga ndi kukonda - 'cuz y'all amadziwa momwe ndimachitira - koma anandiuza kuti kutopa ndibwino kwambiri kuposa ndondomeko yanga yowonongeka, ndiyomwe , yofufuza.
Heywood akusonyeza kuti kutopa kwa anthu omwe ali ndi matenda a idiopathic pulmonary fibrosis amagwirizana ndi kugona kwa mpweya ndi mpweya wosakhutira ndipo zimasiyana ndi kutopa kumene anthu omwe ali ndi matenda ena amtunduwu amakhala nawo.
Kumvetsetsa kumeneku kumachokera muzodziwitsa OdwalaLikeMe, a company of Heywood, akusonkhana kuchokera ku zikwi za anthu omwe amakhala ndi matendawa. Zomwezo zingakhudze momwe matenda a mphutsi amatha kutengera, momwe anthu omwe ali ndi matendawa amadziyang'anira okha, momwe madokotala amadziwira bwino kukhala wodwala komanso matenda, komanso momwe ochita kafukufuku amasankhira zosiyana ndi njira zomwe angayang'anire mayesero amtsogolo.
Heywood ndi anzake agwira ntchito zokwanira mamiliyoni 25 (kuganiza za ululu, kusowa tulo, kumverera, kulekerera mankhwala, kumwa mankhwala ndi zina zotero) kuchokera kwa 300,000 pa matenda opitirira 2300 (kuganiza za khansa, matenda a mtima , chiwindi cha C , ndi kutuluka).
Kenako amawonongera deta imeneyi kuchokera ku zitsanzo zosiyana siyana ndikugwiritsa ntchito masamu am'mbuyo kuti azitha kumvetsa bwino matenda. Mwa kuyankhula kwina, James akugwiritsa ntchito "zotsatira zomwe ziri zothandiza kwa aliyense wa ife kuti adziwe mapeto abwino a mayesero ndi kusintha momwe timayendera matenda."
Heywood akuti, "Ngati mutenga gulu la anthu pamodzi, ndipo muwone zomwe zili zofunika kwa iwo, mungagwiritse ntchito mfundoyi kuti muwone bwinobwino ngati zinthu zikugwira ntchito kudziko lenileni ndikutsogolera chisankho chabwino mu chipatala .... Tiyenera kulingalira ndikumagwira ntchito kudziko limene lingaliro lililonse limene mumapanga pa zaumoyo wanu kapena chithandizo cha umoyo limadziwika ndi zisankho ndi zotsatira za aliyense amene amabwera kale. "
OdwalaLikeMe akuwonetsa kupyolera mu phunziro lowonetsa kuti njira yomwe timawonera mankhwala ndi yoperewera, ndipo ambiri a ife sitikudziwa za malire otero.
Heywood anati: "Anthu ambiri amakhala ndi zaka 80," akuti Heywood, "kuti madokotala awo amagwiritsidwa ntchito pomvetsa matenda, kusamalira komanso kusamalira mankhwala." Ndipo, monga momwe anafotokozera Heywood, sizomwezo.
Potsirizira pake, Heywood akuzindikira kuti matendawa amachititsidwa ndi phenotype, chilengedwe, zokoma ndi zina zotero. Iye amavomereza kuti madokotala ndi "makina okongola," omwe amagwiritsa ntchito chidziwitso ndi kuchepetsa odwala. Komabe, kuthetsa mavuto koteroko kungathe kuwerengedwa ndi kukhazikitsidwa kuti apange moyo wabwino kwa dokotala komanso wodwala komanso kusamalira bwino tonsefe.
Heywood akuti: "Amafunika masamu .... amafunika kukhala ndi masamu ovuta kwambiri."
Malinga ndi odwala aLikeMe webusaitiyi, mpaka pano, bungweli "lawathandiza kutsutsa ndi kunyalanyaza zochitika zachipatala, zomwe zimayambitsa matenda a Parkinson's, omwe amatsimikiziridwa kuti ali ndi matenda a khunyu, amatsitsimutsa kutsogolo kwa mankhwala odwala multiple multiple sclerosis (MS) ndi kusintha kwa thupi, ndi yowonjezera ndi yotsimikiziridwa zotsatira zokhudzana ndi odwala mu psoriasis, autism ndi MS kufufuza. "
Kupereka Chithandizo Za Zanu Zanu
OdwalaLikukupemphani kuti mupereke chithandizo chanu chachipatala ku malo awo. Malingana ndi November 17, 2014, omasuliridwawo "ma datawa amadziwika ndi kugawidwa ndi othandizana nawo kuti athandize odwala kuti amve kafukufuku wa zachipatala, kuti akhale ndi mayesero abwino a chipatala, ndi kupanga zatsopano ndi mautumiki omwe akugwirizana kwambiri ndi zomwe odwala chidziwitso ndi zosowa. " Zindikirani, ngati mukuwerenga nkhaniyi pambuyo pa "Masiku 24 Opatsa" atha, mungathe kupereka zopereka zanu zachipatala.
Heywood akuwerengetsera zopereka zanu ndi zotsatirazi: "Muyenera kudziwa kuti padzakhala wina monga inu mdziko lomwe likukumana ndi vuto lomwe mwathana nalo kapena mwaphunzirapo kanthu. Pitani kwa OdwalaLikeMe [ndi] kugawana zomwe mukukumana nazo , ndipo mudzamuthandiza. "
Pazinthu zaumwini, ndimakonda kuchoka kuzinthu zochokera kumagulu. Komabe, ngakhale atapindulapo - kapena monga amachitcha "osati-phindu-phindu" - chitsanzo cha bizinesi, Jamie ndi anzake adakhazikitsa OdwalaLikeMe.com ngati chithandizo kwa ife tonse. Iwo akulonjeza kuyika deta yathu mwachangu, ndipo ine ndikukhulupirira kwathunthu. Kotero tiyeni tonse tilowemo ndikuthandizira kuti tiwone "superhero" (tiyeni timutche "Supermath," tipeze izo? Ha ha, ine ndikunyoza!) Pa ntchito yayikulu kuti atipulumutse ife tonse!
Zosankha Zosankhidwa
Kucheza ndi James Heywood pa 12/10/2014
Zomwe zinatengedwa kuchokera ku www.PatientsLikeMe.com zidapezeka pa 12/13/2014
Keynote Presentation pa 2014 Msonkhano Wapachaka wa 2014: https://www.youtube.com/watch?v=aqPWv7wS90Y
"Mpangidwe, mphamvu, ndi kutanthauzira kwa maphunziro mu chitsanzo cha murine cha ALS" cha S Scott ndi anzake ochokera ku Amyotrophic Lateral Sclerosis yomwe inasindikizidwa mu 2008. Inapezeka kuchokera ku PubMed pa 12/13/2014.