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.
Razom 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. Razom 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.
Our project aims to:
1. Work with the Ukrainian government to establish a comprehensive national SMA program as part of Ukraine’s 2022 budget (including newborn genetic screening, Spinraza, Evrysdi and Zolgensma treatments, rehabilitation, etc);
2. Provide assistance to children with SMA who need treatment now and can’t wait for developing government initiatives.
SMA is a progressive neurodegenerative disease that has ended far too many young lives full of promise, but today, for the first time in history, SMA children born in countries that provide early genetic screening and treatment can live a normal life as their peers do. Ukrainian children deserve access to the revolutionary treatments that can completely change the outcome for them, their families, and their communities.
We believe that “Save SMA Children” project will not only solve the problem of SMA in Ukraine, but also become an example of civic society engagement to successfully improve Ukrainian healthcare.