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June 4, 2025 55 mins

Any parent of a child with a rare disease hopes for a cure, a treatment, anything to improve their child’s quality of life. We often hear about new developments in medicine for more common illnesses, but are our young zebras forgotten? Is someone doing something to help? Today, Susan gets to speak with Dr Keri-Lyn Kozul, one of the researchers studying the Benji and Lorelei’s specific disease. Parents, we hope this episode gives you hope, that there are people working on this, good people who truly care. 

Dr Keri-Lyn Kozul works in the Niemi Lab at Wash U in St Louis, Missouri. During her PhD, Dr Kozul was one of the first scientists to define the mechanisms of FBXL 4 disease in 2023. We are sure that you can tell from this episode, Dr Kozul’s focus and passion is to help children like Lorelei and Benji, and help find answers for families with FBXL 4 disease. 

  “Three years ago, we wouldn’t even be able to think about these things.” -Dr Kozul

Here’s what you don’t want to miss:

  • Life in the lab
  • Baking
  • Support for families
  • Treatment
  • Call to action

Vote for Dr Kozul!:UMDF Accelerators

Contact Dr Kozul at kozul@wustl.edu if you have questions about this research.

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