FF: No Family Should Have to Cross an Ocean to Save Their Child with Kendra Riley
Summary
Kendra Riley joins the Lions of Liberty Network to discuss her family’s urgent relocation to Italy for life-saving gene therapy unavailable in the U.S. due to FDA restrictions. She advocates for Right to Try 2.0, legislation ensuring American patients can access individualized treatments domestically. Riley shares her daughters’ contrasting outcomes and urges listeners to contact representatives to support this critical medical access reform.
Topics discussed
Intro: Mazda ad and Kendra Riley's story teaser
Welcome to Finding Freedom and guest introduction
Diagnosis of Metachromatic Leukodystrophy in daughters
Relocating to Italy for gene therapy and fundraising
Right to Try 2.0 legislation history and status
Current health status of both daughters
Advocacy progress, FDA approval, and newborn screening
Goldwater Institute partnership and sharing the story
Advice for families: support groups and trusting your gut
Doctor bias, misdiagnosis, and how to support the bill
Final thoughts on hope, resources, and closing remarks
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