In Georgia, 1,670,938 lari (over $600,000) has been raised to help children with Duchenne muscular dystrophy. The live marathon, titled “1 Lari,” was initiated by students of Ilia State University in Tbilisi, and was later joined by students from other universities.
For 100 hours, the young people broadcasted live, calling on the public to rally around children suffering from the severe genetic disorder. At the start, even the most optimistic forecasts hoped to raise at least 100,000 lari, but the result exceeded all expectations. Although the marathon has now ended, donations continue to pour in.
Everyone joined the fundraising effort: from large companies, restaurants, cafes, and small shops to Georgian emigrants abroad. People transferred money en masse, some giving literally their last coins—50 or 80 tetri. Those unfamiliar with online banking brought their donations in person.
The public rallied behind the protests of parents of children with Duchenne, who have been demanding for a year and a half that the state allocate funds to purchase next-generation medicines. Since late April, a continuous protest has been underway outside the government chancellery, accompanied by marches.
Duchenne muscular dystrophy is a rare and severe genetic disorder in which muscles gradually weaken and break down. There are about 80–100 such children in Georgia. Their life expectancy with basic treatment is approximately 20–30 years. The new drugs do not cure the disease, but they ease symptoms and prolong life.
Although the population of Georgia raised an unprecedented amount, it is still not enough to purchase the innovative drugs, which cost millions of dollars. Without state support, it is impossible to provide substantial help to the children. The government, meanwhile, justifies its stance by citing the need to be prudent with taxpayers’ money. Observers believe that every lari donated has become the citizens’ response to this argument.
