Kendra Riley's two daughters were diagnosed with metachromatic leukodystrophy (MLD), a rare terminal genetic disorder. With no FDA-approved treatment available in the U.S., Kendra's family had to raise nearly half a million dollars and relocate to Italy so their youngest daughter could receive a life-saving gene therapy. While that treatment succeeded, their older daughter's disease had progressed too far — she is now in hospice care at age eight. Kendra joins Finding Freedom to advocate for Right to Try 2.0, federal legislation that would give rare disease patients access to individualized gene-based therapies at home without crossing an ocean. She also shares advice for families navigating rare disease diagnoses and resources that can help along the way.
Video Chapters:
0:00 — Intro & Guest Introduction
3:19 — The MLD Diagnosis
4:55 — Moving to Italy for Gene Therapy
6:43 — Right to Try 2.0 Explained
8:07 — Two Daughters, Two Outcomes
13:53 — Advice for Rare Disease Families
17:32 — How to Help & Where to Follow
Links:
Kendra's family blog: rileysroad.com
Instagram: @MrsKendraRiley
Right to Try 2.0 — introduced by Sen. Ron Johnson (WI) and Rep. Diana Harshbarger (TN)
Goldwater Institute — lead organization behind Right to Try 2.0
MLD Foundation — resources for metachromatic leukodystrophy
Armer Foundation for Kids — financial assistance for families of children with life-threatening illnesses
Contact your representatives: House.gov | Senate.gov
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