Celebration or Sale: 200 Million Dollars for Slavic Puryshev's Second Birthday
In a significant development, eight-year-old Slavik Puryshev, who has been battling Duchenne muscular dystrophy, has become the 100th child in Russia to receive the cutting-edge gene therapy drug, Elevidis (dealandistrogen moxeparvovek).
The National Medical Research Center for Children's Health, where Slavik and his mother, Ulyana Purysheva, are currently staying, will monitor the young patient for a few more days following the treatment. Slavik, who was diagnosed with Duchenne muscular dystrophy at 7.5 years old, dreams of learning to ride a bicycle, a feat that seems closer to reality now with this life-changing therapy.
Elevidis is designed to address the "breakdown" in the dystrophin gene, a defect that causes Duchenne muscular dystrophy. This rare and life-threatening disease, often referred to as an "orphan" disease, affects over 29,000 children in Russia, under the care of the presidential foundation "Circle of Kindness."
The foundation, known for supporting children with severe health conditions, has been instrumental in facilitating access to advanced therapies and funding treatment costs for these children. However, specific details on how they are distributing or providing Elevidis or whether they have a dedicated program for it, cannot be confirmed without official statements from the foundation or credible health ministry announcements.
Applications for treatment can be submitted on the Gosuslugi portal or through the regional Ministry of Health. The expert council of the fund reviews applications within 14 days, with urgent ones approved within one working day. The cost of treating rare diseases like Duchenne muscular dystrophy can reach tens of millions of rubles, making the support from the foundation crucial.
Slavik Puryshev's heart also weakens due to his condition, but the hope is that Elevidis will not only improve his mobility but also help strengthen his heart. The previous maximum age for children with Duchenne muscular dystrophy to receive the drug Elevidis was 5 years and 11 months, but new scientific data now allows it to be administered up to the age of 9 years and 1 month.
The main fund of the country, "Circle of Goodness," was created in 2021 and has allocated over 500 billion rubles for the treatment of children with severe and rare diseases. The "Circle of Goodness" fund received additional funding in 2024 and 2025, allowing for more severely ill children to receive treatment.
With the successful treatment of Slavik Puryshev, the foundation continues to bring hope and change lives of children with rare and life-threatening diseases in Russia.
Science plays a crucial role in the treatment of chronic diseases, such as Duchenne muscular dystrophy, a rare medical condition that affects over 29,000 children in Russia. In the field of health and wellness, mental health is equally important, and the foundation "Circle of Kindness" has been instrumental in addressing both physical and mental health issues, providing support for children with severe health conditions, including those with mental health challenges. The successful application of advanced therapies, like Elevidis, not only helps improve the mobility of children with Duchenne muscular dystrophy but also has the potential to assist in strengthening their hearts, offering hope for a better quality of life and longer life expectancy.
