Gods and Genes

In this episode of Gods and Genes, Host Amber Sher, MS, CGC, sits down with Daniel Peach to learn about how the Cure Sialidosis community is transforming the narrative of rare diseases through perseverance, science, and groundbreaking gene therapy research, offering hope and solidarity to families worldwide. This episode is a special episode dedicated to the global charity event: Podcasthon 2026. We’re delighted to be one of 2500 podcasts taking part in this initiative and will be highlighting the amazing work done at Cure Sialidosis 501(c)3 non-profit. Learn more about curesialidosis at curesialidosis.org Learn more about Podcasthon at podcasthon.org Guest Bio Dan Peach is a rare disease advocate and Research Lead with Cure Mucolipidosis, a nonprofit dedicated to finding treatments for mucolipidosis and related lysosomal storage disorders, including Sialidosis. Drawing from his own journey with Sialidosis and the loss of his brother Anton, Dan has turned deep personal grief into a lifelong mission to connect families, accelerate research, and make sure no one faces this diagnosis alone. Through his leadership with Cure Mucolipidosis, ISMRD, and other rare disease groups, he helps build bridges between patients, clinicians, and scientists, championing projects like gene therapy and global patient registries that bring real hope within reach. Dan Peach is the driving force behind Cure Sialidosis, a nonprofit community he helped launch to connect families and fund gene therapy research for Sialidosis. Episode Summary Most people think rare diseases are unsolvable mysteries, but Dan Peach’s story proves otherwise. When diagnosis gaps left his family in the dark for decades, he refused to accept "no treatment" as the end of the line. Today, discover how one man's relentless pursuit of hope is inspiring groundbreaking research in Sialidosis, a devastating yet ultra-rare genetic condition affecting fewer than 5 million people worldwide.This episode dives into the complex science of lysosomal storage disorders, explaining how tiny cellular trash collectors go awry and cause progressive decline. You'll learn about the critical role of enzymes like neuraminidase 1, the genetic mutations behind Sialidosis, and the promising gene therapies on the horizon. But today’s episode is not just a biology lesson–it’s a story of perseverance. Dan Peach shares his journey from diagnosis frustration to pioneering patient advocacy, rallying a global community of families who believe that, despite the odds, a cure is possible.We also explore the profound spiritual and emotional resilience within the Sialidosis community. Hear how faith, hope, and collective activism fuel breakthroughs, even when modern medicine has yet to find a cure. Dan's unwavering belief in science paired with his faith-driven resolve exemplifies the power of advocacy and human connection in overcoming the darkest diagnoses. Perfect for healthcare providers, rare disease advocates, and families confronting similar diagnoses, this episode illuminates how relentless action and compassionate support can rewrite the narrative of otherwise terminal conditions. If you believe that hope and science can intersect to transform lives, this story will inspire you to see the possibilities beyond current limitations. Join us as we celebrate the human spirit mobilized for change–because in every tiny cell and brave heart, there lies the potential for extraordinary discovery and healing. Tune in to learn how one community’s fight for a future without Sialidosis is changing what’s possible–and how your voice can be part of this vital movement. Learn more about Cure Sialidosis at curesialidosis.org See our Podcasthon link: https://podcasthon.org/podcaster/gods-and-genes Be sure to subscribe to Gods and Genes on your podcast app, here on Spotify and here on Apple Podcasts, so you don’t miss future episodes exploring belief, meaning, and medicine. Episode Topics Discussed:

Hosts Becky Miller, Stacy Griffin and Alysia Thomas share their inspirational story on how they started their restorative podcast, Autoimmune Adventures, for all autoimmune warriors.

In this special pilot episode of 'Gods and Genes,' host Amber Sher, MS, CGC, is turning the tables and being interviewed by Kira Dineen, MS, LCGC, CG(ASCP)CM, host of DNAToday. This conversation explores the intersection of healthcare, spirituality, and genetics. Interviewed by Kira Dineen, Amber shares her personal journey and the inspiration behind the podcast, discussing how her religious background influences her practice. The episode delves into the importance of understanding patients' beliefs in healthcare and the potential for science and spirituality to complement each other. Amber shares her personal background growing up in a religiously mixed home (Christian/atheist), her journey through deconstruction and back to a post-deconstruction Christian identity, and why that lived experience drew her to study religion and spirituality in genetic counseling for her graduate capstone at Keck Graduate Institute (KGI). With training in genetic counseling and a background shaped by a religiously mixed upbringing, Amber brings a unique perspective on how to navigate questions of faith in medical settings. In this episode, we covered how some patients raise spiritual or religious concerns in a way that can invite us to build rapport. When this does happen, we go through strategies on how to be ready and not reactive. We cover that personal religious or spiritual identity isn't necessary to navigate these conversations. Instead, skills and training can be adapted for the scenario with examples of validation, reflection, collaboration. We go into how chaplains, rabbis, clergy, etc. can be allies who understand medical contexts and patient values. And we cover tricky situations like navigating when religious beliefs go against evidence-based options. Gods and Genes is a brand new podcast in the Gene Pool Media network. Gods and Genes is hosted and produced by Amber Sher, MS, CGC. Logo graphic designer is Safiah Peeran. Special thanks to Kira Dineen for all the contributions to this episode. Find us at godsandgenes.podbean.com and follow us on Instagram @GodsandGenes. Be sure to subscribe to Gods and Genes on your podcast app, here on Spotify and here on Apple Podcasts, so you don’t miss future episodes exploring belief, meaning, and medicine. If you'd like to share your ideas for the podcast, reach out via email to contact@godsandgenes.com or godsandgenes@gmail.com. Post-Show Corrections: At (12:30) Amber shares that in every session religion/spirituality comes up, she meant to say every rotation she went through, not with every patient. Relevant Resources: Religion On the Mind podcast hosted by Dan Koch (Spotify, Apple, and Substack) "Utterly Humbled by Mystery" by Father Richard Rohr Rob Bell on Spirituality and Mystery Richeimer N, Wilson K, Petrasek A, Weiner J. Emunas Chachamim (faith in the sages): A prenatal genetic counseling needs assessment of Orthodox Jewish clergy in Los Angeles. J Genet Couns. 2024 Oct;33(5):1045-1058. doi: 10.1002/jgc4.1816. Epub 2023 Oct 25. PMID: 37877233. Thompson AB, Cragun D, Sumerau JE, Cragun RT, De Gifis V, Trepanier A. "Be Prepared if I Bring It Up:" Patients' Perceptions of the Utility of Religious and Spiritual Discussion During Genetic Counseling. J Genet Couns. 2016 Oct;25(5):945-56. doi: 10.1007/s10897-015-9922-9. Epub 2016 Jan 13. PMID: 26758255.