Members of the “Defend Iliauni” student movement (Ilia State University) raised about 250,000 lari (nearly $100,000) during a continuous live-stream marathon to help children with Duchenne muscular dystrophy. The funds will be spent on the daily needs of the children, including ventilators, medications, wheelchairs, massages, and other necessities.
“The Georgian people have achieved the impossible, exceeding the initial target of 100,000 by five times. Our live stream will not stop as long as your donations continue. Strength is in unity, we will not stop!” the organizers of the fundraiser stated.
Duchenne muscular dystrophy (DMD) is a rare genetic disorder that causes progressive muscle wasting. The disease often leads to loss of mobility by age 10, heart and breathing 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 syndrome continue to hold protests in Tbilisi. They are demanding that the state import drugs capable of easing the children’s condition and slowing down the progression of the fatal illness.
According to the authorities, they oppose “experimental” therapy. The government states that the drugs demanded by the parents “have appeared in the world only recently,” citing “contradictory information” about their effectiveness, and pointing to the financial interests of pharmaceutical companies and the high cost of the medicines.
On May 19, Prime Minister Irakli Kobakhidze stated that money for purchasing medications must be allocated from taxpayer funds contributed to the budget, and the government is responsible for ensuring that public money is spent rationally.
Parents, for their part, emphasize that drugs approved by the US Food and Drug Administration (FDA) and the European Medicines Agency (EMA) are capable of slowing the progression of the disease, but their high cost makes state support critically necessary.
Protests in Georgia: parents of children with Duchenne demand access to medicines
