A fundraising drive for a boy from Dagestan's treatment was prompted by a refusal to provide assistance under a state program.

73 million rubles have been raised for the treatment of a boy with Duchenne muscular dystrophy; a total of 230 million rubles are needed for an injection of Elevidis. The organizers of the fundraiser explained that he had not yet received assistance under the state program and expressed hope that the fundraising will be completed before the end of Ramadan.

As reported by the Caucasian Knot, 60 million rubles were raised in the first days of Ramadan - more than a quarter of the amount needed to treat a nine-year-old boy from Dagestan with Duchenne muscular dystrophy; a total of 230 million rubles are needed. The fundraising effort is being conducted for treatment with the expensive drug Elevidys, the publication states.

As of February 25, 73 million rubles had been raised for the boy's treatment, the Pure Heart Foundation told a Caucasian Knot correspondent.

The fundraising effort is primarily taking place in Makhachkala. Donations can be made on the foundation's website, through its online app, or by crediting the child's mother's card, a foundation representative said. He specified that most of the funds are deposited into the parents' bank cards.

"The foundation has been collecting funds for the boy's treatment for several months, but initially, the parents tried to obtain the necessary medication through the state program, but were not eligible due to their age – he was about two months away from turning 9. It will take time for the medication to be ordered and delivered," the foundation said.

The foundation noted that bloggers' participation in the fundraiser helps draw attention to the plight of children in need.

"Bloggers have many subscribers and views, so their help is effective. We hope to close this fundraiser by the end of Ramadan," the foundation said.

According to posts on a social media page dedicated to the fundraiser for the boy's treatment, bloggers are expressing similar hope. In videos, they wear vests with fundraising information, distribute water and dates with information about the fundraiser, and hold events to raise awareness.

The press service of the Circle of Kindness Foundation told a Caucasian Knot correspondent that since 2021, 30,000 children diagnosed with one of 110 serious and rare diseases have already received the Foundation's assistance. One such disease is Duchenne muscular dystrophy (DMD).

"A total of over 130 billion rubles have been allocated to provide therapy for nearly 800 children with DMD using the foundation's funds since 2021," a representative of the foundation reported.

Elevidis can only slow the progression of the disease, making its trajectory smoother.

According to him, the single-dose gene replacement therapy for DMD, delandistrogen moxeparvovec (trade name Elevidis), has been available in Russia since June 2024.

"Duchenne muscular dystrophy is an extremely complex disease. Unfortunately, there is still not a treatment for all variants of the dystrophin gene. “At the same time, all existing pathogenetic drugs, including Elevidis, are only able to slow down the progression of the disease, making its trajectory smoother,” emphasized the representative of the Circle of Good.

Duchenne disease (Duchenne muscular dystrophy) is diagnosed in approximately one in 3,500 to 4,000 boys and is characterized by progressive muscular dystrophy that manifests itself in early childhood and leads to the inability to walk in the second decade of life and, in most cases, to death in the second or third decade of life, pediatrician Evgeny Zolotov previously told a Caucasian Knot correspondent.

"The disease is caused by a change (mutation, most often a deletion or duplication) in the dystrophin gene, located on the X chromosome. The gene that causes the disease is located on the X chromosome, and therefore the disease is much more pronounced in boys, since they have only one X chromosome." " he noted. According to him, this is a very rare and narrow specialization among doctors.