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

Patient Empowerment Program: A Rare Disease Podcast

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