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The Story Collider

Am I The Problem?: Stories from CZI's Rare As One Project

Feb 23, 2024   •   30 MIN
The Chan Zuckerberg Initiative (CZI)'s Rare As One Network brings together rare disease patients and advocates in their quest for cures. Both of this week’s stories are from Rare As One grantees who are sharing their stories and experiences navigating diagnoses and organizing their communities to accelerate research, identify treatments, and change the course of their diseases. Part 1: When Riley Blevins’ son gets diagnosed with a rare disease, it changes his life. Part 2: Heidi Wallis becomes completely obsessed with trying to fix her daughter. After spending years in the corporate world in media relations and corporate branding, a rare disease diagnosis for his first-born son changed -- and very well saved -- Riley Blevins' life. Today, he is the senior director of global community engagement of Cure HHT. Heidi is the Executive Director of the Association for Creatine Deficiencies and parent of four children, two of which have GAMT Deficiency- a rare brain creatine deficiency syndrome. Prior to working for ACD she was as a grant analyst and project manager in the Utah Public Health Newborn Screening program and served as an ACD volunteer board member. Heidi's vision is that one day all creatine deficiencies will be diagnosed at birth, through routine newborn screening, and will be treated with an effective and appropriate treatment before the onset of symptoms. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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The Story Collider

Incompetence: Stories about lacking skills

It’s important to remember that incompetence is not a permanent state but often a stepping stone on the path to mastery. In this week’s episode, both of our storytellers share their experiences of navigating moments when they felt completely out of their depth. Part 1: As a student, Emily Pitts was never a fan of science, but now, as a middle school teacher, she’s not feeling confident in her skills to teach the subject. Part 2: Despite his deep desire to study science, Andrew Barnes is constantly told he can’t. Emily Pitts loves telling stories of all shapes and sizes. From 99 seconds to a one-hour Fringe shows. When she's not jotting down notes for stories, she's working on a manuscript about trees, co-producing comedy shows in Iceland, or wandering off in search of other exciting things to do. Recently, she started co-producing and hosting a powerpoint edu-tainment show in Seattle called ‘My Comedian Teacher’. In her spare time, she teaches middle school. It's never too late to follow your dreams, and at 30, Andrew Barnes is doing just that. Back in school to get his degree in biology, Andrew plans to work in Veterinary Medicine or ecological restoration, or both. That story is still being written. Learn more about your ad choices. Visit megaphone.fm/adchoices

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The Story Collider

Mothering: Stories about being a mom

In honor of Mother’s Day this week, both of our storytellers are sharing stories about the good, the bad, and the unexpected parts about being a mom. Part 1: Silvana Clark finds a bat in her newborn’s room and thinks it may have bitten her baby.  Part 2: Leah Moore navigates the challenges of raising a daughter with cri-du-chat syndrome alongside her other children with their own special needs. Silvana Clark’s storytelling career began in high school when she made up creative stories to get out of boring classes. Since then she’s gone on to write 12 books, travel to 63 countries and train her dog to star in TV commercials. Silvana has told stories to groups ranging from the Canadian Llama Association to the American Sunbathing Society. (Yes….nudists.) She’s trying to figure out how to tell a story about when she was a recreation major and had to dissect a cadaver. No gloves provided in those days! Leah Moore has been teaching English and Theater for over sixteen years. She is a graduate of the University of Wisconsin and has a master’s in Educational Theater from New York University. She was the recipient of the prestigious, Teacher of the Year award, presented to ten New York City Teachers annually. She first premiered her writing on her parenting blog, www.lovingyoubig.com, which has an international audience in over 57 countries. Her family has been featured in a documentary about cri du chat, a rare chromosomal disability. She has been a guest on popular media outlets, such as Forbes and ESPN, working to create more stories centering around individuals with disabilities. She is the author of the memoir, Loving You Big: one family embracing the unexpected. She lives in New York with her husband, three children, and her daughter’s collection of rainbow wigs. Learn more about your ad choices. Visit podcastchoices.com/adchoices

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Birds & The Bees: Stories about sex

You and me, baby, ain't nothin' but mammals, and in this week on the podcast, both of our storytellers share some Discovery Channel worthy tales about coitus. Part 1: A new baby and a new job make Edith Gonzalez feel distant from her husband, so she decides to spice things up. Part 2: While working at the zoo, Lee Osorio learns a lot about zoo animal sex and himself. Edith Gonzalez is an Assistant Professor of Archaeology and Critical Museum Studies at the University at Buffalo - SUNY. She studies the global flow of ecological knowledge within the context of transatlantic slavery. Edith is a Fulbright Scholar of the Eccles Centre for American Studies at the British Library, will be a Research Fellow at All Souls College - Oxford University in 2024, and is committed to decolonizing the spaces in which she works. Her current NSF-funded field research takes place on the island nation of Antigua and Barbuda in the Eastern Caribbean, but she is not there on vacation no matter what the photos of pina coladas might indicate. She is a two-time champion of the Smut Slam sex storytelling show because of her creative use of profanity and complete lack of shame. Her dedication to logic and sci-fi fangirldom have earned her the nickname of "the Puerto-Rican Mr. Spock.” Lee Osorio is an actor and playwright based in Atlanta, GA. You can catch him Guest Starring on NBC's Found, or make the trek down to Savannah to catch him in his one person show, Prisontown, premiering at Savannah Rep in May. To learn more visit his website at LeeOsorio.com. Learn more about your ad choices. Visit podcastchoices.com/adchoices


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