SadBaby Crowdfunding Aims to Help SMA Families
SadBaby, an organization that raises donations to support children with spinal muscular atrophy (SMA), is launching a crowdfunding platform.
The project, based on digital currency donations, intends to gather funds from supporters and investors to help families financially with the costly treatments associated with SMA.
“SadBaby is doing its bit to lend a helping hand by creating communities and obtaining donations to support families worldwide in the fight against this uncommon disease,” according to a press release.
Although there is not yet a cure for SMA, several treatments are available to
manage the condition.
Spinraza (nusinersen), marketed by Biogen, was the first therapy approved by the U.S. Food and Drug Administration (FDA) to treat all types of SMA. The treatment is reported to cost from $625,000 to $750,000 for the doses needed for one year, and then approximately $375,000 per year. This therapy is administered throughout a patient’s life.
Zolgensma, a one-time gene therapy developed by Novartis, was approved by the FDA in 2019 to treat all types of SMA in newborns and toddlers up to age 2. Its U.S. list price is $2.125 million for a single treatment.
More recently, Evrysdi (risdiplam), developed by Roche and Genentech, was approved by the FDA as the first oral and at-home treatment for adults, children, and infants 2 months and older with all types of SMA. Its list price is set at a maximum of $340,000 a year.
SadBaby is a crypto money project created to help all babies with SMA. It relies on donation tokens, a new type of digital currency meant to help people donate or receive a donation quickly and safely. The company also has plans to set up an NFT marketplace by the end of this year to help families in need sell NFT products and obtain financial support. (NFT is a digital asset that represents real-world objects that can be bought and sold online.)
With its system, SadBaby holders donate online, buy a small share, or pay for the first products to be produced. Funds are raised at different levels, by giving gifts, T-shirts, or the product itself, to thank supporters for their contributions. “Donations have been given to many special babies and their receipts are available publicly in the telegram channel,” according to SadBaby.
More information about SadBaby and how to donate is available here.
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