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Links & Resources Mentioned:
Find your senators & representatives: https://www.congress.gov/members/find-your-member
NIH Budget Cut Order: https://grants.nih.gov/grants/guide/notice-files/NOT-OD-25-068.html
In this episode, we sit down with Dr. Judith Friedovich-Keil (Emory University), Dr. Nancy Potter (Washington State University, retired), and Dr. Beata Peter (Arizona State University) to discuss the recent executive order cutting NIH funding and how it directly affects medical research and the galactosemia community. We explore the real-world impact of capping indirect costs at 15% (down from 50-60%), what this means for ongoing research, and how families can take action.
From understanding how Babble Boot Camp came to life through NIH funding to learning about the potential $140 million budget cuts at major universities, this conversation discusses what’s at stake for future medical advancements.
Key Topics Discussed:
The importance of NIH funding for rare disease research
How indirect cost caps affect university research infrastructure
Real-life examples of research projects that would not exist without NIH support
The origins of Babble Boot Camp and how it improves speech outcomes for children with galactosemia
The broader implications of NIH cuts beyond galactosemia—impacting cancer, diabetes, and genetic disorder research
The legal process surrounding the temporary restraining order (TRO) and the upcoming decision from Judge Angel Kelley
How families and individuals can advocate for continued NIH funding
Guest Bios:
Dr. Judy Fridovich-Keil – Professor at Emory University with over 30 years of NIH-funded research, specializing in gene therapy and biomedical research, specifically around galactosemia.
Dr. Nancy Potter – Retired professor from Washington State University whose foundational study led to the creation of Babble Boot Camp, improving early intervention for children with galactosemia.
Dr. Beata Peter – Associate professor at Arizona State University who led the Babble Boot Camp clinical trial, demonstrating the program’s effectiveness in improving babble complexity in infants.
00:00 – Introduction & Episode Overview
06:00 – What Are Indirect Costs and Why Do They Matter?
10:00 – NIH Budget Cuts Explained
15:00 – The Real Impact on Universities and Research Labs
20:00 – Dr. Potter’s Story
25:00 – Babble Boot Camp Results
30:00 – The Hidden Costs of Clinical Trials and Research Infrastructure
35:00 – NIH Grants
40:00 – How These Cuts Affect Families
45:00 – The Legal Battle
50:00 – How to Advocate