In rapid response to the family’s appeal, the Society for Orphaned Armenian Relief (SOAR) has devoted the month of June to fundraise to help save the life of eight-month old Ada Keshishyants.
From Kislovodsk, Russia, Ada is suffering from Spinal Muscular Atrophy (SMA) Type 1, a rare, life-threatening genetic disease. Children with Type 1 SMA die slowly, rarely reaching two years of age. SMA attacks the nervous system, causes muscle atrophy, and as a result, the spine curves causing severe restrictions with breathing. As the disease progresses, Ada’s health is quickly declining.
Novartis, the manufacturer of Zolgensma which would help treat if not cure Ada, has refused to reduce the exorbitant $2 million price tag on the gene therapy drug despite the pleas of the family. Russian government health organizations have also rejected the family’s requests for financial assistance.
The family has raised over $1.1 million for Ada, however a $1 million gap still exists to deliver the treatment she desperately needs. Setting an ambitious goal of $1 million to close the gap, SOAR has launched an emergency, global fundraising campaign to rally its donor base and all Armenian supporters to help this child.
Continuing its good work of supporting Armenian children with severe disabilities, SOAR will earmark any surplus donations to establish the Ada Keshishyants Fund to benefit special needs children housed in Armenia’s orphanages.
You can help Ada by making a life-saving donation to SOAR at soar-us.org and raising awareness about SOAR’s campaign for Ada. Please direct all inquiries to SOAR Executive Chairman, George S. Yacoubian Jr. at gyacoubian@soar-us.org.
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