I-Spinal Muscular Atrophy: Ezona zixhobo zibalaseleyo kwi-Intanethi

Umxholo

• Umbutho weMuscular Dystrophy
• Philisa ii-SMA
• Isiseko seGwendolyn Strong
• I-SMA yeengelosi zesisa
• Imibutho engaphandle kwe-United States

Spinal muscular atrophy (SMA) ichaphazela zonke iinkalo zobomi bemihla ngemihla. Ke kubalulekile ukuba ukwazi ukuxoxa ngeengxaki kwaye ufune iingcebiso.

Ukujoyina iqela lenkxaso ye-SMA kunokuba nefuthe elihle kwimpilo yakho yeemvakalelo. Yinto ekufuneka uyiqwalasele abazali, amalungu osapho, okanye abantu abahlala ne-SMA.

Nazi ezinye zezona zixhobo zibalaseleyo kwi-Intanethi zenkxaso yeSMA:

Umbutho weMuscular Dystrophy

Umbutho weMuscular Dystrophy (MDA) ngumxhasi ophambili wophando lwe-SMA. I-MDA ikwabonelela ngamaqela enkxaso, amanye ngokukodwa kwi-SMA. Ezinye zezokuphazamiseka kwemisipha ngokubanzi. Baxoxa ngokulawula usizi, utshintsho, okanye unyango. I-MDA ikwanamaqela enkxaso kubazali babantwana abaneengxaki zemisipha.

Ukufumana iqela lenkxaso, nxibelelana nabasebenzi be-MDA bendawo ohlala kuyo. Intloko kwiphepha leqela leNkxaso ye-MDA, kwaye ufake ikhowudi ye-ZIP yakho kwindawo ethi "Fumana i-MDA kuluntu lwakho" isixhobo sokufumana indawo kwicala lasekhohlo lephepha.

Iziphumo zophando ziya kubandakanya inombolo yefowuni kunye nedilesi yeofisi ye-MDA yakho. Unokufumana kwakhona indawo yokunyamekela kunye nemicimbi ezayo kwindawo yakho.

Inkxaso engaphezulu kwi-Intanethi iyafumaneka kwimibutho yoluntu kwimidiya yoluntu. Zifumane kuFacebook okanye uzilandele kuTwitter.

Philisa ii-SMA

Unyango lwe-SMA ngumbutho ongajonganga kwenza nzuzo. Babamba eyona nkomfa inkulu yeSMA emhlabeni unyaka nonyaka. Le nkomfa idibanisa abaphandi, iingcali kwezempilo, abantu abakule meko, kunye neentsapho zabo.

Iwebhusayithi yabo inolwazi oluninzi malunga nee-SMA kunye nokufikelela kwiinkonzo zenkxaso. Bade babonelele abantu abasandula ukufumanisa ukuba baneepakeji zononophelo kunye neepakethi zolwazi.

Okwangoku kukho izahluko ezingama-34 zokuzikhokhela ezikhokelwa ngamavolontiya e-United States. Iinkcukacha zonxibelelwano ziyafumaneka kwiphepha lezahluko zeCure SMA.

Isahluko ngasinye sihlela imisitho minyaka le. Iminyhadala yasekuhlaleni yindlela entle yokudibana nabanye abachaphazelekayo zii-SMA.

Nxibelelana nesahluko sakho sendawo okanye undwendwele iphepha lezeMpilo leCMA ukukhangela imicimbi kwilizwe lakho.

Unokudibanisa nabanye ngephepha le-Facebook leCure SMA.

Isiseko seGwendolyn Strong

IGwendolyn Strong Foundation (GSF) ngumbutho ongenzi nzuzo ophakamisa ulwazi lwehlabathi lweSMA. Unokunxibelelana nabanye ngenkxaso ngephepha labo le-Facebook okanye kwi-Instagram. Unokudibanisa uluhlu lwabo lwee-imeyile uhlaziyo.

Elinye lamanyathelo abo yinkqubo yeProjekthi Mariposa. Ngale nkqubo, baye bakwazi ukunika ii-iPads ezili-100 kubantu abane-SMA. Ii-iPads zinceda aba bantu ngonxibelelwano, ngemfundo, kunye nokukhuthaza inkululeko.

Bhalisa kwisiteshi se-YouTube seGSF sokuhlaziya iprojekthi kunye nokubukela iividiyo zabantu abaneSMA ababalisa ibali labo.

Iwebhusayithi ye-GSF ikwanayo nebhlog yokunceda abantu abahlala ne-SMA kunye neentsapho zabo ukuba bahlale benolwazi ngophando lwe-SMA. Abafundi banokufunda malunga nobunzima kunye nempumelelo yabo bahlala ne-SMA.

I-SMA yeengelosi zesisa

I-SMA Angels Charity ijolise ekukhuliseni imali yophando kunye nokuphucula umgangatho wokukhathalela abantu abane-SMA. Umbutho uqhutywa ngamavolontiya. Unyaka nonyaka, babamba ibhola yokunyusa imali yophando lwe-SMA.

Imibutho engaphandle kwe-United States

ISiseko seSMA sinoluhlu lwemibutho yee-SMA ezikwihlabathi jikelele. Sebenzisa olu luhlu ukufumana umbutho weSMA kwilizwe lakho ukuba uhlala ngaphandle kweUnited States.

Ndwendwela iwebhusayithi yabo okanye ufowunele ulwazi oluthe kratya malunga namaqela enkxaso.