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The Roadmap to Rare

CSNK2A1 Foundation Podcast 7 Episodes Sep 9, 2026

The Roadmap to Rare is hosted by OCNDS parent Eric Finn and explores the reality of the rare-disease journey. Through real stories, challenges, and research, it offers hope and practical insight for families and patients. Eric talks with parents, advocates, clinicians, researchers, and community leaders about what the path looks like from diagnosis to advocacy and research breakthroughs. The conversations highlight resilience, determination, and the shared goal that no family should have to navigate a rare disease alone.

Episodes

Episode 6: Going the Distance for OCNDS Awareness ft. Kevin Pilgrim Sep 9, 2026 1968 In Episode 6 of Roadmap to Rare, host Eric Finn is joined by Kevin Pilgrim, an OCNDS parent from the UK. Kevin’s son, Hunter, was diagnosed with OCNDS in 2021. Kevin shares his family’s road to a diagnosis, the relief of finding the CSNK2A1 Foundation and its community of parents, and how he turns endurance challenges into fundraising efforts that raise awareness for OCNDS. He also reflects on wha

Episode 5: The Road to the CSNK2A1 Foundation ft. Jennifer Sills Aug 26, 2026 2263 In Episode 5 of Roadmap to Rare, host Eric Finn is joined by Jennifer Sills, Founder and President of the CSNK2A1 Foundation, which supports families affected by Okur-Chung Neurodevelopmental Syndrome (OCNDS). Jennifer shares her family’s road to getting a diagnosis for her daughter and describes how a phone call with Dr. Wendy Chung led her to start the Foundation. Jennifer also discusses the imp

Episode 4: Chatting with a Genetic Counselor ft. Grace Branger, MGC Aug 12, 2026 2256 In Episode 4 of Roadmap to Rare, Eric Finn is joined by Grace Branger, MGC, a genetic counselor who helps families navigate genetic testing and rare disease diagnoses. Grace discusses the basis of genetic testing, explains how to make sense of a genetic report—including uncertain results—and speaks to the guilt parents may feel after a diagnosis. She also expands upon how genetic counseling suppor

Episode 3: Inside OCNDS Research ft. Drs. Gabrielle Rushing and Elena Bagatelas Jul 29, 2026 2331 In Episode 3 of Roadmap to Rare, host Eric Finn is joined by Dr. Gabrielle Rushing, Chief Scientific Officer for the CSNK2A1 Foundation, and Dr. Elena Bagatelas. Together, they unpack the science behind Okur-Chung Neurodevelopmental Syndrome (OCNDS), from explaining the functions of the CNSK2A1 gene and the CK2 protein, to talking about the foundation’s genotype (genetic code)-phenotype (physical

Episode 2: The Day Everything Changed ft. Amber Reynolds Jul 15, 2026 1565 In Episode 2 of Roadmap to Rare, host Eric Finn sits down with Amber Reynolds, a fellow OCNDS parent and advocate from Colorado, whose 14-year-old daughter, Harper, was one of the first 15 people in the world diagnosed with Okur-Chung Neurodevelopmental Syndrome (OCNDS). Amber shares her family’s journey from Harper’s first-week pediatric appointment to the moment they received an OCNDS diagnosis

Episode 1: Meet Your Host, Eric Jul 1, 2026 1139 In the debut episode of Roadmap to Rare, host Eric Finn introduces himself and the mission of the show. Roadmap to Rare aims to shed light on the reality of navigating the rare disease journey through real stories, real challenges, and research. Eric shares his personal story of how his family discovered that his son had Okur-Chung Neurodevelopmental Syndrome (OCNDS), an ultra-rare genetic conditi

Trailer: Roadmap to Rare Apr 19, 2026 55 This is the Roadmap to Rare. Hosted by OCNDS parent Eric Finn, this podcast explores the reality of the rare-disease journey—sharing hope through real stories, real challenges, and research.On Roadmap to Rare, Eric sits down with parents, advocates, clinicians, researchers, and leaders in the rare disease community to talk about what the path really looks like—from diagnosis to advocacy, research

The Roadmap to Rare

Episodes

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