Catherine's story: Tay-Sachs disease

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 on our website at https://umassmed.edu/rarediseasesreal... or wherever you get your podcasts.

To learn more about Tay-Sachs disease, patient advocacy and research, visit:
UMass Chan Medical School 
https://www.umassmed.edu/GrayEdwardsL...

National Tay-Sachs & Allied Diseases Association
https://ntsad.org/diseases/tay-sachs-...

Cure Tay-Sachs Foundation
https://www.curetay-sachs.org/

Blu Genes Foundation
https://blugenes.org/

The Mathew Forbes Romer Foundation
https://mfrfoundation.org/

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Interested in learning more about gene therapy research? Email us at: [email protected]