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With the support of the “Faith in childhood” Foundation www.veravdetstvo.ru


The Story Of Masha

Masha was born in Moscow on June 17, 2018 as a healthy child, with an Apgar score of 8/9 (a high score, indicating that the child was born in excellent condition). The first three months of development did not cause concerns. At the 4th month of Masha’s life, it became noticeable that She was a little weaker than other children. Instead of developing new skills, muscle weakness developed and those already acquired (keeping the head in a prone position, lying with the support of your hands, crawling) began to disappear. Over the next year, Maria’s mother, Elina, went to the hospital three times for examination with her daughter to understand why she did not start turning over, standing, crawling and walking. When Masha was 1 year and 4 months old (in October 2019), The girl was given a terrible diagnosis. This happened only in the third hospitalization. From that moment on, life was divided into Before and After.

In January, we started raising funds on our own. Until April, parents received refusals from charity funds to help one by one. Collection started on a drug that stops the disease with a single injection. After it, you will not need to search for 20 million rubles every year to maintain the child’s condition (life). This drug is called Zolgensma. It is unique and represents a breakthrough in genetic engineering. It can be compared to the first flight into space! This disease with the advent of Zolgensma ceased to be a sentence.

But there are two BUTS!

The drug must be administered strictly before the child is two years old. Masha turns two on June 17, 2020.

Unfortunately, we did not have time to collect the necessary amount, Masha turned 2 years old on June 17. We will try to tell you as much as possible about our further work on getting treatment with Zolgensma in Europe.

To confirm the possibility of placing the coveted injection in the territory of the European Union, Novartis provides an information letter. We got it.

Since we were not able to close the collection until 2 years, the company “Novartis” officially provided a conclusion, in accordance with which Masha has the opportunity to receive this injection in Europe.

We have now contacted the Novartis Department of Finance, which oversees these issues, for more information. We also sent requests to U.S. and German hospitals about the possibility of the introduction of their “Solvency” after 2 years. While waiting for answers.

As for the introduction of “Zolgensma ” in the European Union, the document that regulates the procedure for the introduction of the drug – the European Protocol, will be introduced in the EU no earlier than July 10.

Through our volunteers, we contact the German Ministry of health to clarify the terms and procedure for working with the drug in this country. Now this work is a priority for us, and we hope that Masha will become the first child with such a diagnosis who will deliver the coveted injection in Europe.

And the second is the price. Zolgensma is the most expensive drug in history of medicine. To date, parents have managed to get the maximum discount from the manufacturer and for Masha it will be sold for 2 125 000 dollars. Two million one hundred and twenty five thousand American dollars. Yes, you read it right.

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