The medicine

A medicine called Spinraza (nusinersen) is the first drug to be approved in the United States for treating SMA. After a series of clinical trials on SMA patients, the efficacy of the drug has been demonstrated to sustain the lives of infants and promote their general development. Currently, there is some progress concerning the regulatory approval for Spinraza in the European Union (here is a link for updates on this: . There have been a few treatments in Germany, for example, but the assessments necessary for the approval of Spinraza in the EU are still in progress. While a treatment within the EU would be the most convenient for us, for now, the only chance for access to the drug is in the United States.
The initial cost of the treatment is $750 000. The amount is, unfortunately, way beyond our budget.
For this reason, a foundation with a bank account is currently being set up for my son. For this procedure is time-consuming (it might take a month to be fully functioning), we are setting up a current account, to which transfers can already be made. There is a race against time – we cannot afford to wait.