• Courageous Parents Network

  • Feb 10 2025
  • Length: 18 mins
  • Podcast

Courageous Parents Network

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  • Summary

  • In the final episode of Rare Diseases, Real Stories, two Massachusetts mothers who lost their children to rare diseases share how they turned their grief into purpose. Blyth Taylor Lord started the Courageous Parents Network 13 years after her daughter, Cameron, died from Tay-Sachs disease. Jennifer Siedman lost her son, Ben, to Sanfilippo syndrome just shy of his 18th birthday. Together, Lord and Seidman launched the network to empower and support parents whose children are diagnosed with rare diseases and other serious illnesses. 🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories: umassmed.edu/rarediseasesrealstories 💜 Learn more about the Courageous Parents Network: Courageous Parents Network NeuroJourney 🔗 Share the Courageous Parents Network episode 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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