Save SMA children is a Vostok Donetsk initiative aiming to improve healthcare delivery and access to newly available treatments for Ukrainian children suffering from spinal muscular atrophy (SMA).
Spinal muscular atrophy (SMA) is a leading genetic cause of death in infants. It was considered incurable until the past several years when the first effective treatments (Spinraza, Evrysdi and Zolgensma) have become available. These medicines halt SMA progression but are extremely costly and therefore generally provided through public programs, with national governments negotiating supply with the pharmaceutical companies. Unfortunately, the Ukrainian government doesn’t currently provide any of these treatments. SMA children in Ukraine thus face a terrible existence, slowly losing motor abilities due to nerve cell injury and muscular atrophy resulting in breathing problems and, ultimately, death. As of 2020, there were 267 SMA patients in Ukraine.
Vostok Donetsk volunteers first recognized SMA problem in Ukraine when a 3-month-old son of a known Odesa Euromaidan and Self-Defense activist Vitaliy Svichynskyi, little Dima, got diagnosed with SMA in February 2021. Svichynskyi family started a $2.05 million fundraising campaign to save their son. We realized that this is a global problem and has to be solved at the government level, because these costly fundraisers and broken lives of children are devastating not just to their families but to entire communities and cities. Vostok Donetsk will engage SMA families and their communities to work with the Ukrainian government, hospitals, non-profits and pharmaceutical companies to put an end of SMA and bring Ukraine to the same level of SMA treatment as European countries and the US.