Discover and read the best of Twitter Threads about #ZolGenSMA

Most recents (5)

Het mRNA vaccin = GEEN gentherapie. Toch blijft deze claim rondzingen. Overlijdens en ziektebeelden worden misbruikt om dit kracht bij te zetten. Waarom? Omdat volgers het slikken voor zoete koek. Dat lossen we alleen op met kennis. #Draadje #mRNA #DNA #Gentherapie 1/22
Eerst kort DNA en RNA uitgelegd. Beiden zitten in onze cellen. DNA zit in de cel-kern en kun je zien als een soort archiefkast met werkinstructies, voor die cel, vanuit onze genen. Het zijn de originele instructies van je lichaam. #Draadje #mRNA #DNA #Gentherapie 2/22
Op originelen moet je zuinig zijn. Je hebt er vaak maar één. Best karig, dus dat wil je niet kwijtraken of beschadigen. Ons DNA (die archiefkast) is daarom goed beschermd. De instructies blijven hier veilig inzitten. #Draadje #mRNA #DNA #Gentherapie 3/22
Read 26 tweets
Respected @AndhraPradeshCM @ysjagan Sir, would like to bring to your kind notice regarding children who are suffering with Spinal muscular atrophy (SMA) and looking for life saving medicine Zolgensma @Novartis
@HariKrishnaCMO @RajivKrishnaS @ArogyaAndhra @DrArjasreekanth
Sir, from #AndhraPradesh no one knows how many children suffering with SMA. In social media found the below link,children parents from #Ongole are requesting help to procure the life saving medicine #ZolGenSMA
@Vinayevox
@balineni_vasu @yvsubbareddymp
In India #ZolGenSMA Injection landed cost is 16 Crores plus 6 1//2 crores duties & taxes. Children & parents feel helpless and they are not in a situation to afford 16 Crores plus 6 1//2 crores duties&taxes to procure the injection. @ysjagan @AndhraPradeshCM @ArogyaAndhra
Read 13 tweets
♥️♥️♥️Amor de padre♥️♥️♥️♥️
Hola a todos. Acudo a todos ustedes de esta forma pública para pedirles ayuda con mucha humildad y el corazón en la mano...
...hace 28 días con Madeleine Benavente vivimos el día mas feliz de nuestras vidas con el nacimiento de nuestro Rafael. Este gordo exquisito que ven dormir en mi pecho en la foto de portada...
...esta alegría nos duró una semana, cuando tras la detección de un sindrome hipotónico y una serie de examenes se confirmo lo peor, que padece de Atrofia Muscular Espinal /AME) tipo 1, su forma mas agresiva...
Read 7 tweets
Doğuştan gelen bir hastalık düşünün. Yavrunuz 2 yaşına kadar hastalık nedeniyle ölmemeyi başarırsa, ömrü boyunca kasları yavaş yavaş eriyecek ve hareketini giderek kısıtlanacak.

Tedavi edilemez olan bu hastalığın gen terapisiyle tedavisi bulunuyor.

Fiyat?

2.5 milyon dolar.
SMA olarak bilinen bu hastalığın keşfedilen yeni ilacının 2 yaşından önce uygulanması gerekiyor.

Dolayısıyla yavrunuz normal veya normale yakın bir hayat sürebilsin diye, 2.5 milyon dolar toplamanız gerekiyor.

Ama süre var: 2 yıl.

Ve yavrunuz, bu sırada gözünüz önünde eriyor.
İnsanlar halihazırda bildiğimiz bu çözüme erişebilmek için GoFundMe sayfaları açıyorlar, insanlara para göndermeleri için yalvarıyorlar.

Bu kısım çok normal! Tabii ki yalvaracaklar, yakaracaklar. Hangimiz yapmayız?

Anormal olan, @Novartis'in buna göz yumması.
Read 17 tweets
1/ Hey Tweeps: meet Mercan! 7-month baby girl or a close friend. Mercan has spinal muscular atrophy (SMA1)- a muscle wasting disease that was considered incurable— now there is a cure! A one-time gene therapy by @Novartis that was recently @US_FDA approved!
2/ The drug is called #Zolgensma, and it is currently the world’s most expensive drug ever! $2.4 MILLION! npr.org/sections/healt….
3/ the family has to come up with the cash asap, before Mercan reaches 24 months, because timing is critical: "Infants dosed with #ZolgenSMA as soon as possible after diagnosis had better results than those who waited to be treated" (from curesma.org)
Read 19 tweets

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