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Episode 1: Mark Dant | Connecting the Dots When No Path Exists
Episode 1: Mark Dant | Connecting the Dots When No Path Exists
Mark Dant’s story sits at the foundation of modern rare disease advocacy. Long before online communities, searchable research, or established pathways for drug development, Mark was a father who was told that nothing could be done for his son Ryan, who was diagnosed with MPS I.
In this conversation, Mark reflects on what it meant to refuse that answer. He shares how he taught himself medicine and science without formal training, built a nonprofit from the ground up, and followed lead after lead in a fragmented system that was never designed to help families like his. In the 1990s, that meant studying medical dictionaries, going to libraries, and showing up at conferences in search of anyone who might be willing to help.
The episode also explores the importance of relationships in rare disease progress. Mark’s partnership with physician-scientist Emil Kakkis became a turning point, showing how trust, persistence, and shared commitment can bridge the gap between families and the systems meant to serve them. Together, they helped make possible the first treatment for MPS I, changing not only Ryan’s life but the future for many families who followed.
This conversation is not just a personal story. It reveals a pattern that still defines rare disease today: parents as drivers, relationships as infrastructure, and progress made by connecting dots where no clear path exists.
Guest:
Mark Dant — Dad, police officer, and self-taught advocate who refused to accept a death sentence for his son and helped fund and push the development of the first treatment for MPS I through the Ryan Foundation.
About Rare Rebels™
Rare Rebels™ is an ongoing effort to map the rare disease ecosystem through the people leading the charge, documenting how change actually happens and how connections across science, advocacy, and lived experience shape what becomes possible.
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By Melody Joy Paine
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8686 ratings
Episode 1: Mark Dant | Connecting the Dots When No Path Exists
Mark Dant’s story sits at the foundation of modern rare disease advocacy. Long before online communities, searchable research, or established pathways for drug development, Mark was a father who was told that nothing could be done for his son Ryan, who was diagnosed with MPS I.
In this conversation, Mark reflects on what it meant to refuse that answer. He shares how he taught himself medicine and science without formal training, built a nonprofit from the ground up, and followed lead after lead in a fragmented system that was never designed to help families like his. In the 1990s, that meant studying medical dictionaries, going to libraries, and showing up at conferences in search of anyone who might be willing to help.
The episode also explores the importance of relationships in rare disease progress. Mark’s partnership with physician-scientist Emil Kakkis became a turning point, showing how trust, persistence, and shared commitment can bridge the gap between families and the systems meant to serve them. Together, they helped make possible the first treatment for MPS I, changing not only Ryan’s life but the future for many families who followed.
This conversation is not just a personal story. It reveals a pattern that still defines rare disease today: parents as drivers, relationships as infrastructure, and progress made by connecting dots where no clear path exists.
Guest:
Mark Dant — Dad, police officer, and self-taught advocate who refused to accept a death sentence for his son and helped fund and push the development of the first treatment for MPS I through the Ryan Foundation.
About Rare Rebels™
Rare Rebels™ is an ongoing effort to map the rare disease ecosystem through the people leading the charge, documenting how change actually happens and how connections across science, advocacy, and lived experience shape what becomes possible.