Show Notes
Both of this week’s stories come from Chan Zuckerberg Initiative’s Rare As One Project grantees, who share their deeply personal experiences with rare diseases and illustrate how research is so essential in the search for better treatments and cures. (For more stories like these, you can also check out our previous episode The Story Collider produced with Rare As One in 2019, 2021, 2023, and 2024, as well as our Rare Disease playlist.) Part 1: After multiple relapses, Carlos Guerrero-Anderson takes a chance on an experimental treatment for his rare cancer. Part 2: Angie Weaver holds onto an unshakable belief that her daughter, who has a rare SCN2A disorder, will beat the odds. Carlos Guerrero-Anderson is an executive leader and patient advocate committed to amplifying the voices of Hairy Cell Leukemia and rare disease communities. Diagnosed with a rare blood cancer at age 25, Carlos transformed his personal journey into a lifelong mission to advance equity and create inclusive spaces for patients and families. He currently serves as the Director of Multicultural Engagement & Insights at the Hairy Cell Leukemia Foundation, supporting patients through education, outreach to underrepresented communities, data analysis, program promotion, and the sharing of diverse patient stories. With over 20 years of experience in healthcare insights and data-driven communications, Carlos combines strategic expertise with a lived perspective to create and lead culturally responsive programs that strengthen trust, amplify patient voices, and deliver measurable impact across diverse communities. He is an active member of several national patient advocacy groups, and his work has been featured at national conferences, most recently at the NORD Rare Disease Summit 2025. Carlos believes that storytelling is one of the most powerful tools for breaking barriers, building trust, and ensuring that no patient has to fight alone. Angie Weaver is the Director of Philanthropy and Development for the FamilieSCN2A Foundation, whose mission is to accelerate research, build community, and advocate to improve the lives of those affected by SCN2A-related disorders around the world. After her daughter Amelia was diagnosed with SCN2A, Angie became a passionate advocate for rare disease families—sharing her story to advance research, policy change, and awareness. She lives in northern Minnesota with her husband, Josh, and their youngest daughter, Penelope. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
More from The Story Collider
In this week’s episode, both of our storytellers experience something that that defy scientific explanation. Part 1: After ACL surgery leaves Valarie Walker unable to walk, she can't make it to her dying mother's bedside to say goodbye. Part 2: When Robyn Jay learns her abusive father is in palliative care, she sees it as her chance to finally watch the beast fall. Valarie is a published writer and award winning storyteller. Her stories have been featured on the Moth Radio Hour and the Volume Knob podcast, among others. A Moth Grand Slam winner, she is currently working on a one woman show, Love and Other Hard Truths. One woman, one mic, and a world of possibilities. Robyn Jay is a college English professor with a passion for neurobiology and a keen interest in human behaviour. Storyteller, stage hypnotist, and former player with Montreal Improv, Robyn is on the constant lookout for novelty, adventure, and ways we can broaden our understanding of how we define ourselves. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
In this week’s episode, both of our storytellers struggle to live up to the expectations their parents set for them. Part 1: Growing up, Kat Arney was always told by her mom that she wasn't creative—that she was destined to be a scientist instead. Part 2: After his father's unexpected death, Kevin McNulty becomes an investment banker, convinced it's the life his dad would have wanted for him. Kat Arney is a multi award-winning science writer, public speaker and broadcaster. Initially starting off as a scientist, she left the lab to work in science comms at Cancer Research UK, where she helped shape the charity’s public voice around cancer research. During that time she co-founded CRUK’s ground-breaking Science Blog and became a principal media spokesperson, translating cutting-edge research for journalists and the public. She is the author of three acclaimed popular science books — Herding Hemingway’s Cats, How to Code a Human and Rebel Cell — and has presented numerous radio programmes and podcasts including Ingenious and Bug in the System on BBC Radio 4, and Genetics Unzipped. Today she is the founder and Chief Creative Officer of First Create The Media - a life science communications and marketing agency that helps pioneering innovators in the life sciences find and tell their stories to the world. Kevin is a New York-based comedian who writes and performs at the Upright Citizens Brigade. The hour long version of his solo-show, Half-Orphan, will be at the Edinburgh Fringe this summer. He previously spent nearly a decade as an investment banker and economic researcher, where he formed an unhealthy attachment to telling stories through charts. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
In honour of National Coming Out Day on October 11, we're sharing two stories about queer journeys, self-discovery, and what it means to finally become your authentic self. Part 1: Every time Billie Sainwood is intimate with a partner, she loses consciousness—a medical mystery that makes dating difficult. Part 2: Kelsea Best is sleepwalking through graduate school until an unexpected encounter with a postdoc at a brewery forces her to confront feelings she's spent a lifetime trying to ignore. Billie Sainwood is a poet, performer, and trans menace living in Atlanta. Her work has been featured in Had Magazine, the Atlanta Fringe Festival, and she was recently one of Bloodletter Magazine's 2025 Trans Voices in Horror. Her poetry collections WHAT WAS EATEN WAS GIVEN and 36 VIEWS OF MY BREASTS are available from Kith Books. Kelsea Best is an Assistant Professor at the Ohio State University where she researches topics related to climate justice and equitable climate adaptation. She is a native of Nashville, TN and has been in Columbus for almost three years. She lives with her spouse, Ash, dog, Henry, and cat, Dany. When she isn't teaching and conducting research, Kelsea enjoys horseback riding, exercising, gardening, and reading everything from murder mysteries to fairy romance novels. She is a proud queer woman and nature lover. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Every family has secrets. But some secrets have the power to completely reshape who you think you are. In this week’s episode, both of our storytellers uncover revelations that change everything they thought they knew about themselves. Part 1: When Ryan Jones receives a DNA test from his mom for Christmas, he expects to learn a little more about his family history and heritage. Part 2: After years of unexplained headaches, Alicia Silver is finally diagnosed with multiple sclerosis. Ryan Jones is an award-winning spoken word artist, an environmental engineer, lawyer, and a lemon pepper wing connoisseur. In October 2025, Ryan founded the non-profit organization, Black Empowerment for Environmental Sustainability (BEES), that seeks to create culture and conversation around the pursuit of social and environmental justice by using the performing arts. Ryan was a participant in the Round 11 Reiser Atlanta Artists Lab with the Alliance Theater, where he began development of his debut stage play, "in spite of years of silence," a choreopoem about love, forgiveness, and healing in Black parent-child relationships. Ryan was born and raised in the Metro Atlanta area, where he currently resides. You can find out more about Ryan and his work at gohomeryan.com. Alicia Silver is the Founder and Chief Experience Officer (CXO) of The Silver Lining Experience, a wellness and personal‑development platform rooted in Rest, Clarity, and Alignment. Her work spans restorative hospitality, storytelling, and community experiences designed to help people regulate, reflect, and reconnect with themselves. She spent 30 years in global financial services, building a career defined by precision, pressure, and performance — all while her body was quietly signaling that something was changing. That disconnect between what she projected and what she was actually experiencing became the turning point of her story. Alicia is now writing her debut memoir, drawing from her lived experience navigating invisible illness while rising through global financial services to the role of Director in 2019. She uses storytelling and health‑literacy advocacy to help people recognize the early clues their bodies offer, communicate more clearly with their providers, and move through major transitions without shame. Alicia lives in New Jersey and is a partial empty nester who believes in the power of pausing long enough to hear yourself again. Her mission is to make conversations about health and identity easier, earlier, and more human — one story at a time. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
This week we present two classic stories of people struggling with what the “right” thing to do is. Part 1: Catherine Macdonald always wanted to study sharks, but her first time tagging them in the field doesn't go as planned. Part 2: When Michelle Tong visits home after her first semester of medical school, a stranger presents an ethical dilemma. Dr. Catherine Macdonald is co-founder and Director of Field School (www.getintothefield.com), a marine science training and education company dedicated to improving field research practices while teaching students to perform hands-on research with sharks. She is also the Director of the University of Miami's Shark Research and Conservation Program and an Associate Professor at the Rosenstiel School of Marine, Atmospheric, and Earth Science. Michelle Tong is a second-year medical student from Milwaukee, Wisconsin. She has been published in the Margins and Glass, among other literary journals, and reads for the Bellevue Literary Review. This past summer, she won first prize in the Michael E. DeBakey Medical Student Poetry Awards and received a fellowship from Brooklyn Poets. She teaches poetry at the Icahn School of Medicine at Mount Sinai and lives in East Harlem. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.