Joaquin Niemann is in a desperate race to save his infant cousin's life
Joaquin Niemann has begun donating his own money and raising funds for the care of an infant family member born with a genetic disease
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Pediatrician and public health doctor here and have worked with kids with this terrible and similar genetic disease and am making a donation. The drug Zolgensma - approved about 2 years ago by FDA as a one time dosage is one of the most expensive around, but has shown some promise. Here is an article that tries to explain the $2.1 million cost of a single dose. https://fortune.com/2020/02/07/zolgensma-high-drug-prices/ Some babies get it free (as the company has done a lottery system working with providers) but for the rest some combination of private or public insurance company money (may not pay for this https://www.policymed.com/2019/10/how-are-insurers-treating-the-2m-drug-zolgensma.html ) or raising private funds. On the plus side this one time treatment might cure or least improve the disease substantially and is one of a breakthrough (there is another drug for condition that is given in more doses that is also expensive (but not quite as much) but might not be as effective depending on source)
Regardless, Joaquin Niemann, seems like a great young man. He has a lot of game (and for someone so thin truly bombs it) and is stepping up big time to help the baby. Meanwhile Camilo Villegas goes forward nobly after he tragic loss of his daughter to another terrible condition.
It just shows even these famous professionals can face things off the course that put this great game into perspective. Link to donate at end of article
All the more reason IMO to also and immediately join the THP Albatross Club as they donate to St Jude's - a place working to tackle some of these diseases that tragically affect young kids at no cost to families.
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