I-Spinal Muscular Atrophy: Izinsiza ezihamba phambili ze-inthanethi

-Delile

• Inhlangano YeMuscular Dystrophy
• Phulukisa i-SMA
• IGwendolyn Strong Foundation
• ISAA Angels Charity
• Izinhlangano ezingaphandle kwe-United States

I-Spinal muscular atrophy (SMA) ithinta zonke izici zokuphila kwansuku zonke. Ngakho-ke kubalulekile ukuthi ukwazi ukuxoxa ngezinkinga futhi ufune izeluleko.

Ukujoyina iqembu lokusekelwa le-SMA kungaba nomthelela omuhle enhlalakahleni yakho engokomzwelo. Kuyinto okufanele icatshangelwe abazali, amalungu omndeni, noma abantu abahlala nama-SMA.

Nazi ezinye zezinsizakusebenza ezihamba phambili online zokuxhaswa kwe-SMA:

Inhlangano YeMuscular Dystrophy

I-Muscular Dystrophy Association (MDA) ingumxhasi ohamba phambili wocwaningo lwe-SMA. I-MDA ibuye inikeze ngamaqembu okusekela, amanye enzelwe ama-SMA. Eminye yenzelwe ukuphazamiseka kwemisipha ngokujwayelekile. Baxoxa ngokuphatha usizi, ukuguquka, noma ukwelashwa. I-MDA futhi inamaqembu okusekela abazali bezingane ezinenkinga yemisipha.

Ukuthola iqembu lokusekela, xhumana nabasebenzi be-MDA bangakini. Qonda ekhasini leqembu le-MDA, bese ufaka ikhodi yakho ye-ZIP kuthuluzi locator elithi "Thola i-MDA emphakathini wakho" ngakwesokunxele sekhasi.

Imiphumela yosesho izofaka inombolo yocingo nekheli lehhovisi le-MDA langakini. Ungathola futhi isikhungo sonakekelo sendawo nemicimbi ezayo endaweni yangakini.

Ukusekelwa okuningi kwe-inthanethi kuyatholakala ngemiphakathi yenhlangano yezokuxhumana. Bathole ku-Facebook noma ubalandele ku-Twitter.

Phulukisa i-SMA

ICure SMA yinhlangano yokukhuthaza engenzi nzuzo. Babamba ingqungquthela enkulu kunazo zonke yama-SMA emhlabeni unyaka nonyaka. Ingqungquthela ihlanganisa abacwaningi, ochwepheshe bezempilo, abantu abanalesi sifo, kanye nemindeni yabo.

Iwebhusayithi yabo iqukethe imininingwane eminingi nge-SMA kanye nokufinyelela ezinsizakalweni zokuxhasa. Banikeza nabantu abasanda kutholakala ukuthi banamaphakeji okunakekelwa namaphakethe emininingwane.

Okwamanje kunezahluko ezingama-34 eziholwa amavolontiya zeCure SMA kulo lonke elaseMelika. Imininingwane yokuxhumana itholakala ekhasini lezahluko zeCure SMA.

Isahluko ngasinye sihlela imicimbi minyaka yonke. Imicimbi yasendaweni iyindlela enhle yokuhlangana nabanye abathintekayo yi-SMA.

Xhumana nesahluko sakho sendawo noma vakashela ikhasi lomcimbi we-Cure SMA ukusesha imicimbi esifundazweni sakho.

Ungaxhumana nabanye ngekhasi le-Facebook le-Cure SMA.

IGwendolyn Strong Foundation

IGwendolyn Strong Foundation (GSF) yinhlangano engenzi nzuzo ekhulisa ukuqwashiswa komhlaba wonke ngamaSMA. Ungaxhuma nabanye ngokusekelwa ngekhasi labo le-Facebook noma ku-Instagram. Ungajoyina uhlu lwabo lwamakheli ukuthola izibuyekezo.

Olunye lwezinhlelo zabo wuhlelo lweProject Mariposa. Ngalolu hlelo, bakwazile ukunikeza ama-iPads ayi-100 kubantu abane-SMA. Ama-iPads asiza laba bantu ngezokuxhumana, imfundo, nokukhuthaza ukuzimela.

Bhalisela isiteshi se-YouTube se-GSF se-GSF ukuthola izibuyekezo kuphrojekthi futhi ubuke amavidiyo wabantu abane-SMA abatshela izindaba zabo.

Iwebhusayithi ye-GSF futhi ine-blog yokusiza abantu abahlala nama-SMA nemindeni yabo ukuthi bahlale besesikhathini ngocwaningo lwe-SMA. Abafundi bangafunda futhi ngomzabalazo nempumelelo yalabo abaphila ne-SMA.

ISAA Angels Charity

I-SMA Angels Charity ihlose ukuqongelela imali yocwaningo nokwenza ngcono izinga lokunakekelwa kwabantu abane-SMA. Inhlangano iphethwe amavolontiya. Unyaka nonyaka, babamba ibhola lokuqongelela imali yocwaningo lwe-SMA.

Izinhlangano ezingaphandle kwe-United States

ISMA Foundation inohlu lwezinhlangano ze-SMA ezisemhlabeni jikelele. Sebenzisa lolu hlu ukuthola inhlangano ye-SMA ezweni lakho uma uhlala ngaphandle kwe-United States.

Vakashela iwebhusayithi yabo noma fonela ukuthola eminye imininingwane ngamaqembu okusekela.