#SuperRareBears and #Elrond #community, we are family & want to look out for each other.
It's with this in mind that we have some heartbreaking news
@dnsv123 Son, Victor has recently been diagnosed with a rare condition known as SMA type 1.
#🐻to make a change
#actNow #SRB
It's with this in mind that we have some heartbreaking news
@dnsv123 Son, Victor has recently been diagnosed with a rare condition known as SMA type 1.
#🐻to make a change
#actNow #SRB
The main treatment is Zolgensma by Pharma company @Novartis costing $2.1 million😱
Spinal muscular atrophy (SMA) is a genetic condition that makes the muscles weaker and causes problems with movement.
Spinal muscular atrophy (SMA) is a genetic condition that makes the muscles weaker and causes problems with movement.
It's a serious condition with type 1 being the worst, chances of survival without treatment are slim
There are a few treatments available, although not a cure, they can improve quality and prolong life
There are a few treatments available, although not a cure, they can improve quality and prolong life
Disease-modifying therapy: These drugs stimulate production of SMN protein. Nusinersen (Spinraza®) is for children ages 2 to 12. A different medication, risdaplam (Evrysdi®), helps adults and children older than two months. People take risdaplam daily by mouth (orally).
Gene replacement therapy: Children younger than two may benefit from a one-time intravenous (IV) infusion of a drug called onasemnogene abeparvovec-xioi (Zolgensma®). This therapy replaces a missing or faulty SMN1 gene with a functioning gene.
The issue is these drugs have a massive price tag.
Zolgensma, which is likely the best option is known as the worlds most expensive single use drugs with a massive $2.1 million price tag. It's manufactured by Pharmaceutical company @Novartis
Zolgensma, which is likely the best option is known as the worlds most expensive single use drugs with a massive $2.1 million price tag. It's manufactured by Pharmaceutical company @Novartis
They have programs which offer the treatment for free to certain people and countries.
Victor is located in Romania, our appeal today is to @Novartis, to provide treatment for a discounted price.
Victor is located in Romania, our appeal today is to @Novartis, to provide treatment for a discounted price.
We as a community will help raise funds ,but 2.1 million is a very high target.
@ElrondNetwork community, do your part and let's help spread this message
Let’s give him a chance to walk and live!
🐻to make a change
@ElrondNetwork community, do your part and let's help spread this message
Let’s give him a chance to walk and live!
🐻to make a change
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