What is SMA: Story of Svichynskyi family

2 East 79th Street,New York NY 10075

17 October, 2021

Description

Join us for an opportunity to meet Svichynskyis - the family that started the SMA movement in Ukraine. The family of Vitaliy Svichynskyi and Maria Svichynska has recently proved that there is nothing impossible for loving parents when it comes to the life of their son. With the help of many volunteers in Ukraine and in the US, the two managed to raise over $2 million in about 80 days for the life-saving treatment of their son Dmytro, who was earlier diagnosed with Spinal Muscular Atrophy (SMA) Type 1, the most severe type of this rare genetic disorder. The disorder only gets worse over time without treatment and most children with this disease don’t survive past early childhood due to respiratory failure. Join us for a conversation with Svichynskyi family about fundraising for the most expensive drug in the world, treatment in the US, diaspora help, and public advocacy campaign “Children, We will make it on time” (Dity, My Vstygnemo). Sponsors and Partners: UABPA (Ukrainian-American Business Professionals Association), Honorary Consulate of Ukraine in Pennsylvania, Big Dreams Children's Foundation, Ukrainian Jersey, Ukrainian San Antonio Language: English and Ukrainian COVID protocol: Vaccination card required upon entry. Razom builds a prosperous Ukraine by increasing civic engagement in Ukraine and amplifying the voices of people from Ukraine. Razom maintains a relentless focus on the needs on the ground in Ukraine and on the opportunities to amplify voices from Ukraine in conversations in the United States. We operate primarily in Ukraine as Разом Для України and as Razom in the United States. We prefer to collaborate with organizations and individuals so that we can deliver the highest impact. Razom is a 501(c)(3) organization. Donations and gifts are deductible to the full extent allowable under IRS regulations.