The Story Collider

This week, both of our storytellers are navigating rare disease diagnoses and the feelings of fear, uncertainty, and loneliness that can often come along with them. This episode was produced in partnership with the Chan Zuckerberg Initiative’s Rare As One Project, which brings together rare disease patient advocates from all over the world, uniting them in their quest for cures and working to lift up their efforts by offering new tools, grants programs, and capacity-building support and training. (For more stories like these, you can also check out the previous episode The Story Collider produced with Rare As One in 2019, as well as our Rare Disease playlist.)Part 1: After her child is finally diagnosed with Hermansky-Pudlak Syndome, Donna Appell set off on a mission to make sure other parents have the information she didn’t.Part 2: Feeling unmoored after she’s diagnosed with LFS, Jenn Perry attends a patient conference that changes her life.Donna Appell is the mother of two children and her oldest child has Hermansky-Pudlak Syndrome (HPS). Feeling desperate in her attempts to find help, she founded The HPS Network in 1992. Ms. Appell was appointed to the American Thoracic Society’s (ATS) Public Advisory Roundtable and has received The ATS Public Service Award and the “Presidential Commendation”. For her work in Puerto Rico, she received the inaugural recognition from the ATS, “Innovations in Health Equality Award”. She was employed for 22 years as a RN in a Critical Care Open Heart ICU. In 2013, Appell and her daughter were chosen as one of 30 Heroes to celebrate the 30th Anniversary of the Orphan Drug Act by the Office of Orphan Product Development at the FDA and the National Organization for Rare Disorders (NORD). In 2019, Appell was honored to be awarded a Rare Impact Award from NORD.Jenn Perry is the President of the Li-Fraumeni Syndrome Association. She is a wife and mom of 2 girls ages 28 and 18. As a LFS patient myself Jenn is relentless in the supporting the LFS community in multiple ways. Jenn loves her horse, and competition partner, Maximus. In addition to riding, she has worked as a business consultant in the QSR industry, and she currently co-owns a Gymnastic & sports facility. Gymnastic was her first love, and she enjoy judging competitive gym at all levels. It is her honor to have the opportunity to speak in front of everyone today, as bringing awareness to this syndrome is so needed, in order to find the cure. Learn more about your ad choices. Visit megaphone.fm/adchoicesSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Please note: this episode’s stories contain discussion of suicide and mental illness.This week, we present two stories about the people in our lives who inspired us not only to love science, but to find our place and reach our full potential within it. With this episode, we also kick off our end-of-year fundraising campaign! Find out more here. If there’s someone who inspired your science story, you can honor them with a donation to The Story Collider in their name.Part 1: On her first day as a music therapist, Jude Treder-Wolff realizes the job isn’t what she expected.Part 2: After witnessing tragedy as a child, Mani-Jade Garcia stops speaking.Jude Treder-Wolff has been featured on PBS Stories From The Stage, RISK! live show and podcast, Mortified, Generation Women, Mistakes Were Made, Now You’re Talking, The Armando Diaz Experience at The Magnet Theater, StoryFest at The Peoples Improv Theater, The Liar Show, Story Exchange, and many others in the New York City area, Story District in Washington, DC, and Ex Fabula in Milwaukee, WI. She believes in the power of story to build community and is host/creator of (mostly) TRUE THINGS, a game wrapped in a storytelling show, which was the first Long Island-based storytelling show. It was performed monthly at The Performing Arts Studio in Port Jefferson from 2014 until the shutdown – including a teen edition - and expanded to include shows at Industry in Huntington, NY and The Dolphin Bookshop in Port Washington. From 2016-2018 co-facilitated a teen storytelling program for rural teens in southeast Iowa, is a Licensed Clinical Social Worker, Music Therapist, and improviser.Mani-Jade Garcia, or MJ (they/them) is a Black-Indigenous-Latinx two-spirit abolitionist, science communicator, artist, and certified holistic yoga teacher exploring the relationship between indigenous healing practices and mental health. Mani-Jade works as an educator for the Racial Trauma Center at Genesee Valley Psychology and as a community-based researcher/evaluator with Social Insights Research). Mani-Jade is currently completing their doctorate in Clinical Psychology. They are co-founder of Black In Mental Health (Twitter/IG: @BlackInMH), Black In Data (Twitter: @BlkInData) and founder/director of Refuge Workgroup (Twitter: @RefugeWorkgroup) a movement dedicated to bringing safety, accountability, and healing to academic and professional spaces. Contact Mani-Jade at manigarcia.com. Learn more about your ad choices. Visit megaphone.fm/adchoicesSee 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 stories, both of our storytellers are apprentices to mentors who have profound impacts on how they see the world, though in very different ways.Part 1: Fresh out of college, Stephanie Keep is hired to be the assistant to legendary evolutionary biologist Stephen Jay Gould.Part 2: At age fourteen, Fabrizzio Subia begins assisting a local dentist in treating undocumented patients.Stephanie Keep was trained as a paleobiologist at Wellesley College and Harvard University. Opting to leave research behind, she now resides comfortably in the center of a Venn diagram that includes science education, academia, and communication. She is a co-founder of a BiteScis, a spin-off organization of ComSciCon that brings together educators and researchers to develop misconception-focused lesson plans for high school students that are rooted in current research. Outside of BiteScis, Stephanie works on state-level science assessments and does work for nonprofit groups that produce free high-quality stuff for teachers. This year, she also finally crossed off the last item on her science education to-do list and started teaching science as part of the Science for Scientists program. Stephanie loves farm animals, hates olives, can’t spell the word “resources,” and will do pretty much anything to get references to whales, cephalopods, and xenarthrans into the stuff she writes.Fabrizzio Subia is a Chicago based multidisciplinary artist. An Ecuadorian immigrant, his work touches on themes of migration, family, and identity through the mediums of storytelling, poetry, collaborative and individual performance, and visual art. He earned his BFA from the School of the Art Institute of Chicago in 2020, and has exhibited work across Chicago, including 6018 North Gallery and SAIC's SITE Galleries. He is a member of Chicago's P.O. Box Collective, and co-founder of Tortas y Talento Open Mic. Learn more about your ad choices. Visit megaphone.fm/adchoicesSee 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 stories of people who had to figure out how to continue life after loss.Part 1: Lawrence Green wakes up in a hospital room to find that he’s sustained devastating injuries in a motorcycle accident.Part 2: After tragedy strikes her family, Camille Adams Jones must find a way to confront her own trauma.Lawrence Green joined the United States Army as a Wheeled Vehicle Mechanic in 2008. During his time served, he was stationed in South Korea, then Fort Hood, TX and eventually deployed to Iraq for about a year before being honorably discharged in 2012. Post-service, Lawrence used his mechanic experience to work as a Heavy Equipment Technician before his life changed forever on March 29, 2015. Determined to find a renewed purpose after his injuries, he connected with Adaptive Training Foundation while still very atrophied and with a wound vac on his left limb. He began participating in a few classes over a 2-year period of time and enjoyed it so much he eventually became a volunteer trainer at ATF. Lawrence is now pursuing his personal training certification to continue his love of fitness. Through ATF, he fell in love with Para Ice Hockey and joined the Dallas Stars Sled Hockey Team. He has big goals set for himself and hopes to make the Paralympic team in 2022.Dr. Camille Adams Jones, LMSW, CEAP, PMP, is a recognized psychotherapist in the Washington, DC metropolitan area. Dr. Jones earned her doctoral degree from the University of Southern California where she focused on family dynamics and trends with a special emphasis on Divorce Trauma in school aged youth. This author and organizational behavior scientist oversees a flagship Federal Occupational Health and Work/life balance program where she has become a standout corporate cultural transformation advisor and advocate for wellness in the workplace via Employee Assistance Programming. Dr. Jones is also a celebrated private practitioner for couples, hosting relationship restoration retreats and family rebuilding symposiums. Lastly, she works as a Parent Coordinator and Custody Evaluator in partnership with Washington, DC and the state of Maryland court systems. In her free time she is a mother of three of the best modes of inspiration a person can ask for. Together with her husband Jerome, the two launched a real estate investment firm that has flourished since its inception in 2017. Most recently Dr. Jones has added the title of farmer to her credentials, purchasing over 88 acres of farmland to build a wellness retreat with specific intent of exposing health, care, and restoration to all.   Learn more about your ad choices. Visit megaphone.fm/adchoicesSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Part 1: In his early twenties, Jonathan Feakins goes above and beyond for his job as a West Nile virus mosquito technicianPart 2: While working as a coral reef biologist in Panama in 1989, Nancy Knowlton and her young daughter are taken into the custody of the Panamanian military when the U.S. invades.Jonathan Feakins is just some nerd who has tried to spend his life wandering strange places, reading obscure books, doing weird science, petting adorable animals, fighting the good fight, and having wonderful friends. He somehow has a species of earthworm named after him, and once got kicked out of an all-you-can-eat restaurant (for eating all he could eat). He first learned the power of a good story from his grandmother, as she regaled him with tales about her childhood pet crocodile (whose name was Baby), or about the time she (accidentally) cleared out a biker bar with a Swazi bible student named Enoch. You can learn more about his questionable life choices at bookwormcity.com.Nancy Knowlton has been a scientist with the Smithsonian since 1984 and is now a scientist emerita, first in Panama and most recently at the National Museum of Natural History in DC. She’s also been a professor at Yale and the Scripps Institution of Oceanography, where she founded the Center for Marine Biodiversity and Conservation. Her work on coral reefs has taken her literally around the world, and she has spent so much time underwater that she long ago lost count of the hours. She has been a member of the U.S. National Academy of Sciences, the author of Citizens of the Sea, and was the Editor-in-Chief of the Ocean Portal website. Despite the glut of bad news these days, you can find her @seacitizens talking about #OceanOptimism and #EarthOptimism. Learn more about your ad choices. Visit megaphone.fm/adchoicesSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Beauty is often considered a superficial quality, but it has tremendous power over us. This week’s episode, produced in partnership with Grow by Ginkgo, features two stories adapted from Grow's 2020 print issue on Beauty. To read more, head over to growbyginkgo.com.Part 1: When Sudeep Agarwala becomes a synthetic biologist, he rediscovers a tradition from his childhood.Part 2: Jasmina Aganovic’s passion for science leads her to an unexpected place.Sudeep Agarwala is a yeast geneticist and synthetic biologist at Ginkgo Bioworks. His writing about biology has appeared in the Washington Post and Grow Magazine.Jasmina Aganovic is a cosmetics industry professional passionate about translating innovation into meaningful brands that have an opportunity to connect with a broader audience. Her previous company, Mother Dirt, included a line of products focused on the skin microbiome. Now, Jasmina is working with the powerful Ginkgo Foundry to see what we can learn from biology and can harness through microbes for use in the personal care industry. Learn more about your ad choices. Visit megaphone.fm/adchoicesSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

This week, we conclude our final Stories of COVID-19 series with two stories about the lasting impacts of the pandemic. Both of these stories ask: Where do we go from here?Part 1: Months after Howard Lieberman contracts COVID-19 on a business trip in March 2020, he continues to suffer from symptoms of the virus.Part 2: When Monica drops off her fiancé, who has been suffering from shortness of breath, at the hospital, she doesn’t know it’s the last time she’ll see him alive.Nationally known storyteller Howard Lieberman moved from Brooklyn to bucolic but shockingly Republican Stillwater MN in 1990. His jaded yet surprisingly tender performance style has made him a favorite on the national and, thanks to Zoom, global storytelling scene. Howard is a member of the Board of Directors of the National Storytelling Network.Monica is a trainer, higher education educator, an instructional designer, and a Diversity, Equity, and Inclusion facilitator with more than 20 years experience. She works for the University of Michigan as an instructional designer and DEI educator. She is a proud graduate of both Wayne State University as well as Central Michigan University where she obtained both a Bachelor’s Degree in Journalism and a Master’s Degree in Education. Monica loved to dance, listen to music, travel the Caribbean, and watch television until, that is, her fiancé died of Covid-19 in April...here is her story. Learn more about your ad choices. Visit megaphone.fm/adchoicesSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

This week, we bring you two stories about the struggle to find balance during the COVID-19 pandemic, whether it’s as a scientist, a mother, or all of the above.Part 1: Psychiatrist Xiaosi Gu studies COVID-19’s impact on mental health, just as her own begins to deteriorate.Part 2: Stacey Bader Curry’s family and career are thriving — until the pandemic throws it all into chaos.Dr. Xiaosi Gu is one of the foremost researchers in the area of computational psychiatry. Her research examines the neural and computational mechanisms underlying human beliefs, decision making, and social interaction in both health and disease, through a synthesis of neuroscience, cognitive science, and behavioral economics approaches. After receiving a Bachelor’s degree in Psychology and Economics from Peking University in Beijing, Dr. Gu moved to New York City to pursue a Ph.D. in Neuroscience at the Icahn School of Medicine at Mount Sinai. Dr. Gu then completed her postdoctoral training in computational psychiatry at Virginia Tech and the Wellcome Trust Centre for Neuroimaging, University College London (UCL). During her time in London, she founded the world’s first computational psychiatry course at UCL. Before re-joining Mount Sinai, Dr. Gu held faculty positions at the University of Texas, Dallas and UT Southwestern Medical Center. She is currently an Assistant Professor in Psychiatry and Neuroscience, and a Principal Investigator at the Friedman Brain Institute and the Addiction Institute at Mount Sinai.Stacey Bader Curry is a writer and storyteller who lives in Maine. She is an 8-time Moth Slam winner, including a Grand Slam, and has performed on PBS' Stories From the Stage, and many podcasts. Learn more about your ad choices. Visit megaphone.fm/adchoicesSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In our fourth installment of this series, love conquers all, even the obstacles presented by COVID-19.Part 1: Having planned to tie the knot in April 2020, Jared Waters finds himself separated from his fiancée by COVID lockdown instead.Part 2: The pandemic prompts Jamie Brickhouse and his partner of thirty years to consider getting married for the first time.Jared Waters is Stand-up Comedian residing in New York City. He hails from Brunssum, The Netherlands. Jared gained his stand up legs in Tampa, Florida. His hard work and consistency with the ability to work clean and edgy has led him to be one of the most impressive Up and Coming comedians in the New York. When Jared is in between jokes, the future of this great nation is residing on his shoulders as Kindergarten teacher and host of the Podcast “One Man, One Tree, and a Hill”Called “a natural raconteur” by the Washington Post, Jamie Brickhouse is the New York Times published author of Dangerous When Wet: A Memoir of Booze, Sex, and My Mother, and he’s appeared on PBS-TV’s Stories from the Stage, The Moth Podcast, Risk! Podcast, Story Collider Podcast, and recorded voice-overs for the legendary cartoon Beavis and Butthead. He is a four-time Moth StorySLAM champion, National Storytelling Network Grand Slam winner, and his daily #storiesinheels TikTok videos have over two million views. Jamie tours two award-winning solo shows, Dangerous When Wet, and I Favor My Daddy. His new show, Stories in Heels: Tall Tales of the Women Who Changed My Life debuts at the Gotham Storytelling Festival in New York City, November, 2021. Learn more about your ad choices. Visit megaphone.fm/adchoicesSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

This week, we bring you two stories about negotiating life under the same roof during the COVID-19 pandemic. Part 1: When Gail Thomas moves in with her family during the pandemic, tensions brew between sisters.Part 2: The pandemic brings Wendy Bredhold and her ex-husband back together under the same roof for Thanksgiving.Gail is a writer/actor/storytelling coach and lawyer living in NYC. Her voiceover credits include John Cameron Mitchell’s Anthem: Homunculus, Angelo Rules, David Letterman, and Beavis and Butthead. Her short comedy, My BFF won audience favorite at New Filmmakers. As a speechwriter for over 30-world class events including the Tribeca Film Festival, her words have been uttered by Oscar winners and fancy people with great clothes. But none of that matters now, we’re in a pandemic. Gail is out walking her dog.Wendy Bredhold works for climate and environmental justice representing the Sierra Club’s Beyond Coal Campaign in Indiana and Kentucky. She lives in Evansville, Indiana with her daughter Beatrice Rose and cats, Pearl and Pinky. She loves dancing to live music, reading, writing and rabble-rousing. Learn more about your ad choices. Visit megaphone.fm/adchoicesSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.