Stephanie Herzog

Board Member for Cure Rare Disease, Working on Finding Cures for Duchenne Muscular Dystrophy for Her Son Max

When a rare genetic disorder hits home, it takes someone like this week’s Team Never Quit Podcast guest, Stephanie Herzog, to help find strategies to cure it. The Duchenne Muscular Dystrophy (DMD) diagnosis of her son, Max, was the driving force to connect her with Cure Rare Disease, who is currently developing life-saving therapeutics in collaboration with the world’s leading academics, clinicians, regulatory experts, translational experts, and manufacturing experts. Stephanie serves as a board member. The organization’s ground-breaking research is bringing to fruition the potential for permanent muscular regeneration, which was, at one time, science fiction.

In this episode you will hear:

  • When we learned about our son’s condition, we put together a golf tournament to raise funds because it was A: Our only option, and B: Our best option to cure our kid.
  • 80% of boys with Duchenne Muscular Dystrophy have a gene deletion in the dystrophin gene. Max has a duplication of the dystrophin gene.
  • In what should be the best time ever with your child, that’s when we find out he has this horrible disease.
  • We had like a funeral in our house for like a month.
  • The weight of his future was heavy.
  • Our team, through Crispr technology, hope to edit Max’s gene mutation.
  • 6 years ago, this was science fiction.
  • Boys usually get diagnosed between the ages of 4-6. They lose their ability to walk between the ages of 10 and 12. They usually lose their battle in their early 20s.
  • They’re literally knocking out the gene duplication along a string in his DNA on the cellular level.
  • Using the Crispr technology, the muscle cells are auto-correcting, producing dystrophin on their own.
  • You wonder: “How am I going to live with this? And you do.”
  • Faith is everything.
  • You need somebody to pray to.
  • When the going gets tough they have prayer.

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