What happens when scientific discoveries collide with sensationalist headlines? When Japanese scientists published research showing they could remove the extra copy of chromosome 21 in isolated skin cells, media outlets quickly proclaimed: "Could Down syndrome be eliminated?" These dramatic claims not only misrepresented the actual science but sparked legitimate concern among people with Down syndrome and their families.

Dr. Nicole White, principal investigator for Down Syndrome Achieves, and Dr. Meredith, both mothers of people with Down syndrome, join us to unpack what's really happening with this CRISPR technology. The reality? While researchers removed the extra 21st chromosome from some cells in a lab setting, we're light-years away from "eliminating Down syndrome" - and that's not the goal most scientists are pursuing or that society would approve for the technology.

We dive deep into how CRISPR works, why isolated skin cells in petri dishes are dramatically different from living human beings, and the staggering technical challenges that make this technology far more limited than headlines suggest. What emerges is a more nuanced story about precision medicine that could potentially address specific health conditions associated with Down syndrome rather than attempting to "cure" a genetic difference that many people consider central to their identity.

The conversation raises profound questions about media responsibility, scientific ethics, and who gets to decide research priorities. As Dr. White explains, "Any of this needs to be done with input from the community, with that careful care and stepwise approach and acknowledging all of the risks and what didn't work." We explore how sensationalist reporting robs individuals with Down syndrome of the opportunity to evaluate research objectively and reinforces harmful stereotypes that devalue their lives.

Whether you're fascinated by genetic technology, concerned about disability rights, or simply want to understand how to read scientific news more critically, this episode offers valuable perspective on one of the most misunderstood genetic research stories of recent years. Join us as we separate hype from hope and explore what's truly possible - and ethical - in genetic research.

Genetic Support Foundation: https://geneticsupportfoundation.org/

Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/

Think billing for genetic counseling services is just about paperwork and numbers? Think again. In this eye-opening episode, we pull back the curtain on one of the most critical yet overlooked challenges facing genetic counselors today—getting fairly paid for their expertise.

Joined by billing expert Brian Reyes, MS, CGC from UT Southwestern Medical Center (speaking in his personal capacity), we dive into the perfect storm of obstacles preventing genetic counselors from being properly recognized and reimbursed. From outdated Medicare policies to missing dropdown menus in insurance systems, these seemingly small administrative issues create massive barriers to patient care. Brian shares his journey from billing-avoidant genetic counselor to passionate advocate, offering a masterclass in navigating these complex systems.

The conversation reveals a surprising truth: when genetic counselors can reach insurance decision-makers, they often find allies who understand the value genetic counselors bring to appropriate testing and patient care. The real challenge? Getting past gatekeepers to have these crucial conversations. We explore the new CPT code 96041 that finally recognizes the substantial behind-the-scenes work genetic counselors perform, and why this matters for sustainable practice.

Most powerfully, we reframe billing not as a tedious administrative task but as a fundamental equity issue. When genetic counseling centers don't bill for their services—whether through grant funding or giving up on reimbursement—they may inadvertently perpetuate a system where vulnerable populations lose access to critical genetic services. As Brian passionately argues, "Are we leaving money on the table that should rightly belong to the healthcare system for providing that service?"

Ready to advocate for change? Listen now to understand how the Access to Genetic Counseling Services Act could transform genetic counseling accessibility nationwide, and what steps you can take today to improve recognition and reimbursement in your practice.

Genetic Support Foundation: https://geneticsupportfoundation.org/

Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/

The House just passed what President Trump calls the "Big Beautiful Bill," and its implications could be devastating for millions of Americans who depend on Medicare and Medicaid. As this massive budget reconciliation bill heads to the Senate, Katie and Stephanie break down how its complex provisions could trigger automatic cuts to these essential programs despite promises to protect them.

For people with disabilities, the stakes couldn't be higher. Many Americans don't realize that crucial supports like home and community-based service waivers are considered "optional" programs for states to fund - despite being lifelines that make community participation possible. When states face budget constraints from restricted federal matching funds, these services become vulnerable targets. Dr. Meredith shares her 17-year wait to secure services for her son with Down syndrome, illustrating the already overwhelming barriers families face to access and maintain these supports.

The podcast reveals a troubling historical context: institutional care remains the legal default for people with disabilities, with community-based options existing only as "waivers" from this outdated model. Despite being more humane and cost-effective, these critical services could face cuts while the bill simultaneously increases tax exemptions for the ultra-wealthy.

This episode serves as both an urgent call to action and an educational resource about how Medicaid waivers function. Listeners will gain clarity on the differences between Medicare and Medicaid, understand the bureaucratic gauntlet families navigate to access services, and learn concrete steps to advocate with their senators and governors before it's too late. The message is clear: society's treatment of its most vulnerable members reflects its true values, and now is the time to stand up for inclusion and support.

Call your senators today at 202-224-3121 to make your voice heard about this legislation that could impact millions of Americans with disabilities and their families.

CBO Letter about Medicare and PAYGO

Big Beautiful Bill Text

CBO Score

Committee for a Responsible Federal Budget Analysis

Genetic Support Foundation: https://geneticsupportfoundation.org/

Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/