As part of the “Protect Iliauni” live broadcast, 1,500,000 lari has already been raised to help children with Duchenne muscular dystrophy.
Dozens of companies, including publishing houses and universities, have joined the marathon.
The organizers reported that the live broadcast is ongoing and will not be stopped as long as donations continue to come in.
The funds raised will be used for the needs of children with Duchenne dystrophy—including ventilators and generators for their uninterrupted operation, medications, specialized beds, wheelchairs, as well as spinal surgeries and other medical expenses.
Additionally, Duchenne muscular dystrophy (DMD) is a rare genetic disorder that causes progressive muscle atrophy. The disease often leads to loss of mobility by age 10, heart and respiratory problems, scoliosis, and early death, typically before the age of 30. There are about 100 children with this diagnosis in Georgia. In early March, one of them, 17-year-old Avtandil Bregadze, passed away.
Parents of children with Duchenne continue to hold protests in Tbilisi. They are demanding that the state import drugs capable of alleviating the children’s condition and slowing down the progression of the fatal illness.
The authorities state that they oppose “experimental” therapy, arguing that the drugs demanded by the parents “have only recently appeared in the world.” They cite “contradictory information” regarding their effectiveness, pointing to the financial interests of pharmaceutical companies and the high cost of the medicines.
Georgian Prime Minister Irakli Kobakhidze stated that the money for purchasing the medications must come from funds contributed to the budget by taxpayers, and the government is responsible for ensuring that public funds are spent rationally.
Georgian PM on Duchenne drugs: 50–60 million lari is the people’s money
