• Catherine's story: Tay-Sachs disease

  • Feb 10 2025
  • Length: 32 mins
  • Podcast

Catherine's story: Tay-Sachs disease

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  • Summary

  • Two-year-old Catherine Radivilova’s story is as unlikely as it is amazing. While pregnant with Catherine, Tamara Radivilova and her son fled their home in Ukraine in the days following Russia’s invasion, while her husband stayed behind to fight in the war. For the first nine months of her life Catherine developed as expected, but after symptoms arose and setbacks occurred, Catherine was diagnosed with Tay-Sachs disease, a fatal genetic disorder. Through an unlikely series of events, Catherine and her mother found themselves in the U.S., where Catherine became the final participant accepted to a UMass Chan gene therapy clinical trial for Tay-Sachs. Despite ongoing challenges, Tamara Radivilova’s resilience and love shine through as she fights for her daughter’s future. 🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories: umassmed.edu/rarediseasesrealstories. To learn more about Tay-Sachs disease, patient advocacy and research, visit: UMass Chan Medical School  National Tay-Sachs & Allied Diseases Association Cure Tay-Sachs Foundation Blu Genes Foundation The Mathew Forbes Romer Foundation   🔗 Share Catherine’s story using the following hashtags: #RareDiseasesRealStories, #RareDiseases, #podcast  Interested in learning more about gene therapy research? Email us at: AdvancingTogether@umassmed.edu
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