Duchenne advocacy group continues protest, calls supporters to join weekly march

The advocacy organisation Together Against Duchenne Muscular Dystrophy announced that, by June 10, Georgian citizens living with Duchenne muscular dystrophy who rely on assisted ventilation or have a severe accompanying genetic condition will receive a one-time payment of ₾10,000 (about $3,746).

According to the organisation, a new support programme will begin in June aimed at improving the quality of life of children living with Duchenne muscular dystrophy. The initiative includes the purchase of essential assistive equipment, such as customised wheelchairs, specialised beds, respiratory devices and adapted transportation.

The group called on all Duchenne patients in Georgia who require such support to contact the organisation.

In a statement, the organisation thanked donors for their contributions, saying public support would help ease the condition of affected children and extend their lives.

At the same time, activists reiterated their main demand to the Government — the introduction and funding of modern medications used to treat Duchenne muscular dystrophy.

“Our primary demand to the state remains unchanged: we are calling for the introduction of modern Duchenne treatment medications. Every day of delay means a step backwards and is equivalent to a crime,” the statement said.

The organisation noted that it is continuing to collect signatures, both electronically and in person, in support of financing Duchenne treatments from the state budget.

Activists also announced that their 24-hour protest outside the Government Administration building will continue and called on supporters to join the movement’s weekly march, scheduled to begin at 6:00 p.m. near Rustaveli metro station.

“Together, let us save children’s lives,” the statement said.