• Episode 52: Chris Velona - Batten Disease CLN8

  • Dec 18 2024
  • Length: 37 mins
  • Podcast

Episode 52: Chris Velona - Batten Disease CLN8

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  • Summary

  • Chris shares the profound journey of raising his son, Sebastian, who has Batten disease CLN8. He reflects on the bittersweet experiences of witnessing Sebastian’s once-vibrant abilities erode under the weight of this rare, degenerative condition. Chris shares his constant search for new therapies that can help reduce the frequency of his son's seizures. We also talk about his fund-raising for clinical research and the lack of appetite from pharmaceutical companies to treat his son's rare condition.

    The song that Chris chose is Tiny Dancer by Elton John.

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