Patient Empowerment Program: A Rare Disease Podcast

Inheriting Huntington’s Disease and Aspiring to Prolong Lives with Jeff Carroll


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Jeff Carroll, Ph.D., inherited a gene that will eventually lead to symptoms of Huntington’s Disease. Alongside researching this debilitating disease as an Associate Professor of Neurology at the University of Washington, he’s a Scientific Advisor for n-Lorem and member of the Access to Treatment Committee (ATTC) that helps screen and assess submitted patient applications.

On This Episode We Discuss:

  • 2:45 Joining the Amy on a whim
  • 4:30 Serving in Kosovo and Germany
  • 6:00 Learning that his mother was diagnosed with Huntington’s disease (HD)
  • 10:25 Seeking information and diving into the world of Biology and HD
  • 14:52 Deciding to have children when there was a chance that they’d inherit the disease and utilizing preimplantation genetic diagnosis (PGD)
  • 18:30 Watching Ionis make initial progress on an ASO for Huntington’s disease
  • 23:10 How Jeff became involved with n-Lorem
  • 27:30 Most important things Jeff has learned during his role at n-Lorem
  • 30:38 Helping people is motivating
  • 32:11 Nano-rare patients teach us a lot about science
  • 33:57 Jeff expects to receive an ASO treatment one day
  • 35:22 n-Lorem is on your side

  • ...more
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    Patient Empowerment Program: A Rare Disease PodcastBy n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)

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