Episode 9: Tell Her It Can’t Be Done, Then Watch What Happens ft. Nasha Fitter

Overview


In Episode 9 of Roadmap to Rare, host Eric Finn is joined by Nasha Fitter, a rare disease parent to her daughter Amara, who has FOXG1 syndrome. Nasha is also co-founder of the FOXG1 Research Foundation and co-founder and Chief Business Officer of Citizen Health. She shares how Amara’s prognosis turned into nine years of building: first a foundation and then a platform that turns families’ medical records into research-ready data. Nasha explains how Ari, Citizen Health’s AI teammate, helps caregivers with everyday tasks. She also discusses the recent milestone of the first child receiving FRF-001, an investigational gene replacement therapy for FOXG1 syndrome, in a clinical trial, and how medical records data gathered through Citizen Health helped shape the trial’s design.


Key takeaways:


  • Nasha’s family’s journey after a FOXG1 syndrome diagnosis
  • Lessons learned from the early days of the FOXG1 Research Foundation
  • The story of founding Citizen Health and how families’ medical records can drive research forward
  • How Ari supports caregivers, from tracking symptoms to Medicaid waivers and individualized development plans (IEPs)
  • What the first patient dosed in the FRF-001 trial means and the milestones that are ahead
  • How medical records data from Citizen Health shaped the FRF-001 clinical trial
  • Why rare disease families are stronger when they come together


Episode highlights:


1:27: Meet Amara, and what she has taught Nasha

4:04: Receiving a FOXG1 diagnosis

6:50: Lessons learned while building the FOXG1 Research Foundation

9:00: How families’ medical records sparked the idea for Citizen Health

12:30: What Ari does for caregivers on a typical day

17:12: Surprising ways families are using Ari: public benefits, Medicaid waivers, and IEPs

19:28: The first child dosed with FRF-001 and what it means, and doesn’t mean yet

24:27: How medical records data shaped the FRF-001 clinical trial design

30:04: Hope for the future and why the rare disease community must come together


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