1.6m lari for children with Duchenne in Georgia
A student initiative in Georgia to support children with Duchenne muscular dystrophy has grown into a large-scale public movement, raising more than 1.6m lari within a few days.
The unprecedented mobilisation of civil society groups, small businesses and Georgian emigrants came in direct response to the government’s decision not to fund the import of expensive medicines. The crisis exposed a deep divide between public opinion and government messaging, which for months had argued against purchasing the drugs, citing concerns over their effectiveness and serious side effects.
Against this backdrop, the fundraising marathon launched by students became a broader expression of public distrust towards the authorities. Through their support, many people appeared to send a clear message: they did not accept the government’s arguments and believed access to the medicines was essential for affected children.
How the fundraising marathon began
The live-streamed fundraising marathon began at 19:00 on 20 May on the initiative of students from Ilia State University.
Organisers said their aim went beyond raising money. They also wanted to demonstrate public sentiment on whether the state should fund necessary treatment for children with Duchenne muscular dystrophy.
The initial fundraising target stood at 100,000 lari, with students expecting to reach that amount within 50 days. However, donors contributed the full sum within just a few hours, and the livestream continued.
By 22 May, the campaign had raised more than 400,000 lari. The total exceeded one million lari by 23 May and reached 1.6m lari by 24 May.
According to the organisers’ latest statement, the livestream will continue for as long as people keep donating.
You can still donate money:
TBC Bank: GE20TB7881145068100026
Bank of Georgia: GE49BG0000000611756133
How will the money be spent?
Although the campaign has raised a substantial amount, the funds still do not cover the full cost of medication. Organisers have therefore decided to use the money for other needs of children with Duchenne muscular dystrophy.
Those needs are extensive and include ventilators, generators required to keep them running continuously, specialised beds, wheelchairs and spinal operations.
This support does not change the main demand: families still want the state to introduce and fund modern treatments for Duchenne muscular dystrophy in Georgia that can slow the progression of the disease.
Duchenne muscular dystrophy is a severe genetic condition that most commonly affects boys. The first symptoms usually appear between the ages of two and five.Children struggle to run and climb stairs, fall frequently and tire easily. The disease progresses over time. By the age of 10, many children lose the ability to walk and become dependent on wheelchairs. Problems affecting the heart and lungs often develop later. Patients may require ventilators, adapted beds, specialised wheelchairs and ongoing rehabilitation. Modern medical treatments do not cure the disease. Instead, they aim to slow its progression, preserve physical function and improve quality of life.
According to one of the marathon’s organisers, Lasha Jandzhava, “every lari donated became a statement by the Georgian people that the government must provide children with medication. Even now, donations have not stopped: some people give one lari, others 35 tetri. In other words, people are donating the last of what they have to send a message to the government.”
Who joined the campaign?
Dozens of companies and organisations took part in the fundraising campaign. Participants included publishers, universities, clinics, shops, catering businesses, festivals and small enterprises.
University of Georgia donated 15,000 lari to support children with Duchenne muscular dystrophy. Publishing houses Sulakauri, Intelecti, Diogene, Artanuji, Palitra L, Karchkhadze and Pegasi joined the campaign. The bookstore Biblusi announced it would transfer one lari from every book sold on 23 May to the fund.
Company Trio Group said it would donate 10,000 lari from each apartment sold in the Lisi Trio complex before 1 June to the support fund for children with Duchenne muscular dystrophy.
“Let us support together the children who need our help the most,” the company said.
Clinics Curatio and BabyMed also joined the campaign. Curatio offered medical services to affected children.
“Special thanks to the students of Ilia State University, who launched a remarkable initiative to support these children and brought together enormous hope and solidarity in a single day. We are also joining the work they started — with love and wholeheartedly,” the clinic said.
Restaurants, sports shops, a bedding manufacturer, an electronic music festival and other businesses also took part. Some pledged a percentage of sales to the fund, while others donated a fixed amount from each transaction.
Civil donations and the political meaning of solidarity
One of the most notable aspects of the marathon has been the small donations made by ordinary citizens. Organisers and parents say people transfer one lari, 80 tetri, 35 tetri or sums such as 20 and 50 lari. Some donate money they had saved for other purposes.
Citizens have also handed money directly to parents who have spent weeks demanding access to medication from government institutions.
One elderly woman brought 50 lari because she did not know how to transfer money electronically. She told the parents:
“[I was fortunate], God gave me and my children good health, gave me happiness and the ability to have children.”
The campaign has gradually taken on a meaning that goes beyond charity. Students and supporters increasingly see it as a public response to the government’s argument that budget funds should be spent “rationally” rather than used by a “pharmaceutical mafia”.
A campaign by pro-government media against the marathon
After the student fundraising marathon raised more than one million lari and gained widespread attention, pro-government media outlets and social media accounts began circulating the same message: the state “already funds” children with Duchenne muscular dystrophy, and additional fundraising efforts amount to populism and misleading the public.
Pro-government commentators and analysts also began arguing that the state already spends more than three million lari on these children.
However, the reality of what the government funds — and when that funding began — is different.
The government started financing treatment for patients with Duchenne muscular dystrophy in 2023. Current support includes hormone therapy and rehabilitation programmes involving 12 to 15 sessions a month. Hormone therapy includes Deflazacort, a medication which, according to parents, costs around 20 lari in pharmacies.
Following protests by parents, authorities began granting disability status to children with Duchenne muscular dystrophy immediately after diagnosis from February 2025 onwards. Children with that status receive 425 lari a month.
Families had demanded a multidisciplinary medical monitoring programme for nearly two years. The Iashvili Clinic launched it only in May 2026, after parents began protesting publicly. Before that, parents say they had paid around 5,000 lari out of pocket for the necessary tests.
Many essential needs remain unfunded. These include specialised wheelchairs, ventilators, generators, adapted beds, lifts, accessible transport and other forms of support required in the daily lives of children with Duchenne muscular dystrophy.
The central argument of the pro-government campaign — that “the state already provides funding” — fails to capture the broader picture. State funding exists, but it does not cover either modern treatments or many of the everyday needs for which students are raising money.
The government’s position
For a year and a half, parents of children with Duchenne muscular dystrophy have called on Georgia to import medicines that slow the progression of the disease. During that time, parents also sought meetings with Prime Minister Irakli Kobakhidze, but without success.
On 19 May 2026, Kobakhidze said the government had a responsibility to protect “the people’s money”. In his assessment, around 50 million lari would need to be spent annually on medicines for Duchenne muscular dystrophy that do not cure the disease.
“We are talking about a fairly large amount of money, around 50 million, which would need to be spent every year. And here a simple question arises… Will spending that amount achieve the desired result, or will we simply enrich the pharmaceutical mafia?” Kobakhidze said.
The Health Ministry says questions remain over the safety and effectiveness of the requested medicines. Officials also stress that no treatment currently cures Duchenne muscular dystrophy.
That is true — Duchenne muscular dystrophy remains incurable today. However, parents are not asking for a cure. Their argument is that modern treatment can slow the progression of the disease, allow children to maintain functional abilities for longer and improve their quality of life.
Why has the campaign become such a prominent issue?
The issue of children with Duchenne muscular dystrophy in Georgia has moved beyond a specific healthcare policy issue. It has become a broader question about what happens when the state describes treatment as too expensive and risky, while society uses its own money to signal different priorities.
Public participation in the campaign cannot replace a state programme. The 1.6m lari raised is a substantial amount, but it will not provide systemic support for the treatment of Duchenne muscular dystrophy. The state still needs to make decisions on such diseases, taking into account medical evidence, international practice, budget constraints and patients’ needs.
However, the marathon has already changed one thing: the issue of children with Duchenne muscular dystrophy is no longer simply a struggle between parents and state institutions. It has become a public debate about what “the people’s money” means — and who decides when spending it is justified.
1.6m lari for children with Duchenne in Georgia
