Luke Rosen signs his daughter up for a research study to find out what's causing her seizures and ends up having to fight to find the answers. Luke Rosen and Sally Jackson founded KIF1A.ORG in 2016 following their daughter Susannah’s KIF1A diagnosis. Luke has extensive experience in rare disease stakeholder engagement, advocacy and research initiatives. Recognized by Global Genes as a 2018 RARE Champion of Hope Honoree, Luke often speaks at international events about innovation in therapeutic development, and about his family’s rare disease journey. Luke’s mission is to accelerate biotech innovation and forge efficient collaborations within the scientific and patient communities, resulting in discovery of treatment for children like Susannah. He relentlessly works to empower families affected by rare genetic diseases to play an active role in discovery, from pre-clinical research through clinical trial readiness and regulatory approval.
After doctors are unable to prevent her daughter's daily seizures, Tracy Dixon-Salazar decides to take matters into her own hands. Dr. Tracy Dixon-Salazar is a neuroscientist, geneticist, and, patient advocate. Her desire to get her Ph.D. was inspired by her daughter who developed Lennox-Gastaut Syndrome (LGS) at the age of 2. She did her Ph.D. and post-doctoral work at UC, San Diego where she studied the mechanisms of brain development and synaptic plasticity, identified genetic causes of rare disorders in children, and researched precision therapeutics in stem cell and animal models of pediatric disease. During her research tenure, and after 16 years of watching daily, unrelenting seizures in her child, she uncovered the driver of her daughter’s illness and identified a novel precision therapy that improved her child's life. Dr. Dixon-Salazar is an accomplished scientist, proven thought leader, highly sought-after speaker, and staunch advocate for genomic medicine, patient-centric research, and patient engagement.
When surgeon Bhuvanesh Singh sees his patient back in the hospital months after what he thought was a successful surgery, he grapples with feelings of failure. Bhuvanesh is an Attending Surgeon at Memorial Sloan-Kettering Cancer Center. He has cared for over 5000 patients with cancer in his over 20-year career at the center. He is recognized as a leader in his field, having delivered over 500 lectures worldwide. He has helped to refine surgical techniques, contributed to the improvements in cancer staging, and has been involved in research that has dramatically changed the management of cancers of the head and neck region and lung. Not satisfied with available treatment options, Dr. Singh completed a PhD in Medical Molecular Biology to pursue laboratory research. His laboratory work has led to the development of novel anticancer compounds that are currently being optimized for use in the treatment of many different types of cancers. The story Dr. Singh is shared today occurred almost 20 years ago and was a defining moment in his career and life.
After finally getting together in their forties, Chris Wade and his wife are determined to have a baby -- even if it means following some unconventional advice. Chris Wade is a native Washingtonian and a retired member of the Metropolitan Police Department in Washington, DC. He is a Certified Healthcare Protection Administrator and currently works in healthcare security. Chris is a graduate of the Johns Hopkins University Police Executive Leadership Program, is a certified Mental Health First Aid instructor and a certified CPI Nonviolent Crisis Intervention instructor. He is married to his best friend and simply adores his children. His life is filled with countless adventures which he is willing to share through storytelling.
After a tragedy, Brianna Shaughnessy discovers a different way to heal at the Great Barrier Reef. Brianna Shaughnessy is a PhD Student in Environmental Biology at the University of Massachusetts Boston. Prior to joining Jarrett Byrnes' lab as a Coasts and Communities Fellow, she completed a Master's of Professional Science through Northeastern University's Three Seas Program. Her past research focussed on surveying kelp forests with the purpose of assessing the impacts of global change on such critical ecosystems. As a native of Cape Cod, MA, an integral part of Brianna's upbringing involved constantly questioning and developing a deep respect for coastal communities. Her current research focusses on the development of sustainable fisheries practices in hopes of acting as liaison between the community that raised her and the scientists aiming to understand and protect it.
Engineering PhD student Jeannie Purchase sets out to help a couple in rural South Carolina who have endured dirty tap water for a decade. Jeannie M. Purchase is a PhD student in the Department of Civil and Environmental Engineering at Virginia Tech. Jeannie received her bachelor’s degree from Clemson University in Biosystems Engineering and her master's from Virginia Tech in Construction Engineering and Management. Her research focuses on examining the efficacy of point-of-use and point-of-entry filters when exposed extreme corrosion conditions and investigating the barriers hindering the widespread adoption of these technologies in at-risk communities. Her interdisciplinary work is at the intersection of citizen science, water quality, remediation, and public health. Through her research, Jeannie collaborates with residents to pursue solutions community-based problems. Jeannie switched between engineering disciplines in pursuit of finding ways to better serve communities through effective communication and collaboration when designing solutions to relevant everyday problems. She believes that it is important for engineers to communicate and engage with the community to understand their needs. Jeannie loves to teach, mentor and inspire students, and work with communities like Denmark, SC.
After Kenny Kinds begins lying to his parents about his grades, he has to question why he is in engineering school in the first place. Kenny Kinds is an application developer/comedian and yes, those two things pair together nicely. He also co-hosts the monthly storytelling show Sorry Please Continue at The Heavy Anchor in St. Louis.
When pharmacy professor Lindsay Acree volunteers at a local needle exchange, her beliefs about addiction are challenged. Lindsay Acree, Pharm.D., AE-C is an assistant professor at the University of Charleston School of Pharmacy. She received her pharmacy degree from the University of Charleston School of Pharmacy in 2013 and completed a PGY1 residency in academia/ambulatory care also with the University of Charleston. Dr. Acree provides patient care in several clinics throughout the Charleston area including the City of Charleston Wellness clinic and the Family Health Associates of South Charleston. Dr. Acree is a board certified asthma educator. Her involvement with the Harm Reduction Clinic located within the Kanawha Charleston Health Department includes teaching the naloxone training to patients, caregivers, and members of the community as well as assisting with Harm Reduction Clinic services. In addition to clinical services, Dr. Acree teaches several topics within the University such as substance use disorders, asthma, COPD, and tobacco cessation.
A routine procedure with one of the primates in her lab becomes much more complicated when neuroscientist Paula Croxson cuts herself with the scalpel. Paula is a neuroscientist, science communicator, musician and open water swimmer. She received an M.A. from the University of Cambridge and a M.Sc. and a Ph.D. from the University of Oxford before moving to New York to run a neuroscience lab. She is now Associate Director for Public Programs at Columbia University's Zuckerman Institute. She is also the flautist in alternative rock band Marlowe Grey and nerdy rock band Pavlov’s Dogz. The swimming is apparently for “fun.” She is also a senior producer for The Story Collider.
Tajana Schneiderman struggles to live up to the expectations and sacrifices of her brilliant scientist mother. Tajana Schneiderman is a PhD student in planetary sciences at MIT. Although she thought astronomy would be a career that let her look up, she finds she spends a lot of time reading papers, writing code, and analyzing data. She’s interested in detecting and characterizing exoplanetary systems to better understand the way systems form and evolve. In her free time, she knits, reads, and goes on backpacking adventures.
As the scientist in the family, Steve Scott takes on a new role when his dad must undergo heart surgery. Steve is a science communicator and public engagement professional working at the Wellcome Genome Campus near Cambridge in the UK. He has a passion for helping scientists to find ways of sharing their stories, and a particular interest in engaging people with genetics and genomics. Steve also loves musical theatre, exploring nature, music that gets you dancing, and seeing the best in people!
Struggling to conceive, Sara Sweet makes her third attempt at intrauterine insemination just before her family's Christmas gathering. Sara Sweet is a writer and storyteller from Boston. She is a Moth Grand Slam champion and has been a featured teller with Fugitive Stories, Now Hear This, Listen Up Storytelling, Life Is Good and the Moth MainStage.Sara and her husband are aunt and uncle to 8 nieces and nephews.
Lonely after her move to New York City, Adrien Behn finds a friend in her copper IUD. Adrien Behn is a triple threat storyteller: she is a podcaster, writer, and live story performer. She has been featured in the New York Times and has self-produced her first podcast, Strangers Abroad, a narrative travel podcast. You can find her performing around the city or in her kitchen making pies. This story originally aired on The Story Collider’s podcast on July 19, 2019, in an episode titled “Private Parts: Stories about the science of intimate areas”. Find the transcript and other information here: https://www.storycollider.org/stories/2019/7/15/private-parts-stories-about-the-science-of-intimate-areas
When biologist Andrew Holding's new baby stops feeding, his scientific instincts are put to the test. Andrew Holding is a Senior Research Associate at Cancer Research UK’s Cambridge Institute and a Fellow of Downing College, Cambridge. His research programme brings together his experience of cutting edge mass spectrometry, DNA and RNA sequencing techniques with computational biology to investigate the function of the nuclear receptors. Andrew has worked on many science outreach and public engagement projects including founding and organising Skeptics in the Pub in Cambridge, which holds monthly talks by various speakers with the aim of highlighting the application of critical thinking and scientific method. This story originally aired on The Story Collider’s podcast on July 12, 2019, in an episode titled “Concern: Stories about being worried”. Find the transcript and other information here: https://www.storycollider.org/stories/2019/7/8/concern-stories-about-being-worried
While recovering from prostate cancer surgery, Dana Strout finds a creative solution to his incontinence. Dana Strout is a Maine native, with roots in this state going back over 300 years. He is a practicing attorney in the Camden/Rockport area, specializing in construction law. He is a photographer working in 19th and early 20th century processes, and was an on air programmer for many years on WERU Community Radio. He currently lives with his wife Dorie and two cats in Camden, and enjoys gymnastics, a warped sense of humor and a good story. This story originally aired on The Story Collider’s podcast on July 19, 2019, in an episode titled “Private Parts: Stories about the science of intimate areas”. Find the transcript and other information here: https://www.storycollider.org/stories/2019/7/15/private-parts-stories-about-the-science-of-intimate-areas
As he grows up, Ed Greco's two great loves -- his high school sweetheart, and physics -- come into conflict. For the last ten years, Ed Greco has taught physics at Georgia Tech where he has been active in the development of new curriculum for undergraduate students. A native Floridian, he moved to Atlanta in 2000 with his high school sweetheart to attend graduate school. When not in the classroom, he coordinates the outreach activities for the school of physics and serves as radio show co-host “Fat Daddy Sorghum” on WREK’s Inside the Black Box where he enjoys sharing his passion for science with the Atlanta community. Photography, Conchology, foraging for wild edibles, and exploring Appalachia on a motorcycle are just a few of his varied pastimes. Mostly, however, he enjoys spending quality times with his loving family. This story originally aired on The Story Collider’s podcast on July 5, 2019, in an episode titled “Marriage: Stories about making it work”. Find the transcript and other information here: https://www.storycollider.org/stories/2019/7/1/marriage-stories-about-making-it-work
Weeks before an important performance, opera singer Laura Crocco notices there's something wrong with her voice. Laura Crocco is an Australian researcher in music performance and human movement science. She graduated with a Bachelor of Music (Voice Performance) and a Master of Applied Science (Health Science) from The University of Sydney and is now preparing to commence doctoral studies in 2020. The demanding nature of elite music training that she encountered during her undergraduate studies prompted her research interest in how the science of human motor learning may improve the way we train musicians. Laura aims to provide evidence-based professional development for music performance teachers in higher education so as to encourage student autonomy, improve performance and nurture the wellbeing of our future musicians. She is passionate about encouraging music teachers and students to recognise the current issues in one-to-one training, and showing them through her published works, presentations and masterclasses how more systematic and objective research may serve as an ally to the field. Laura often presses buttons on an accordion and hopes to one day convert an old upright piano into a mini-bar. This story originally aired on The Story Collider’s podcast on July 26, 2019, in an episode titled “Dream Deferred: Stories about hitting roadblocks”. Find the transcript and other information here:
After finding out her mother has breast cancer, high school teacher Nakeysha Roberts Washington gets hit with the news that one of her students has a brain tumor. Nakeysha Roberts Washington, M.S. Ed is the owner and Creative Director of Genre: Urban Arts (GUA), a platform where artists can become published digitally and in print. Nakeysha spends much of her time preparing opportunities for creatives to share their art as part of the necessity for inclusion. All of this with the knowledge that working in the space of developing yourself as a creative is often seen as a privilege. Pop-up galleries and performances organized by Nakeysha via Gene: Urban Arts allows everyone in the creative community the ability to develop themselves as artists, become published and showcase their art through performance and exhibition. GUA is now a playground for 85+ creatives, all who have their own medium in which they create— Their own Genre. Nakeysha has been published in Routledge, various literary journals, and anthologies. In Spring 2018, she was honored with having a monologue performed in Brooklyn, New York, at the Billie Holiday Theater as part of a showcase entitled 50 in 50: What Place Do We Have in this Movement? Also in Spring of 2018, Nakeysha was a presenter at the UWM National Writing Project in which she conducted a creative writing workshop for educators. In June of 2018, a piece of her creative nonfiction entitled, “No Cream” was published in Wisconsin’s Emerging Writers: An Anthology of Nonfiction. In 2019 Nakeysha happily accepted a position as a producer with her favorite podcast The Story Collider as the “Midwest Connect” as she will be producing shows in Chicago, IL and Milwaukee, WI. Additionally, she will begin work on obtaining a doctoral degree in Urban Education at the University of Wisconsin- Milwaukee. Looking forward to July 2019, Nakeysha will be part of a panel at Modern Language Association’s 2019 International Symposium in Lisbon, Portugal as part of a panel to discuss culturally responsive pedagogy in relationship to the teaching of writing, an opportunity afforded to her through her connection with the University of Wisconsin- Milwaukee’s ACCESS program. Nakeysha’s writing and other work centers around social justice issues because she believes that it is a creative’s responsibility to interrogate and reveal the intricacies of social constructs through art. This story originally aired on The Story Collider’s podcast on July 12, 2019, in an episode titled “Concern: Stories about being worried”. Find the transcript and other information here: https://www.storycollider.org/stories/2019/7/8/concern-stories-about-being-worried
Veterinarian Rodrigo Solis thinks he's found the perfect job -- taking care of horses in the Mexican Army -- until a new commander takes over. Rodrigo Solis received his Doctor of Veterinary Medicine degree in Mexico in 2006 and spent one semester abroad studying at the University of California-Davis. He then went on to earn a Master’s of Sustainable Development at the Technological Institute of Higher Studies Monterrey. He’s currently a 5th year PhD candidate in the School of Resource and Environmental Management at Simon Fraser University in Canada where he studies monarch butterfly conservation. Since 2018, he has been a fellow at the ReNewZoo graduate training program. He recently started a part-time position with eButterfly, an online citizen science platform that tracks butterflies across North America. This story originally aired on The Story Collider’s podcast on July 26, 2019, in an episode titled “Dream Deferred: Stories about hitting roadblocks”. Find the transcript and other information here: https://www.storycollider.org/stories/2019/7/22/dream-deferred-stories-about-hitting-roadblocks
After turning down a tenure position, Sarah Brady struggles to adapt to her new life as the spouse of a physician. Sarah Brady is a storyteller, teaching artist, and writer who relocated to England from the United States a year and a half ago due to her pediatrician husband's job. To say that science has had an impact on her family would be an understatement. This story originally aired on The Story Collider's podcast on July 5, 2019, in an episode titled: "Marriage: Stories about making it work." Find the transcript and other information at: https://www.storycollider.org/stories/2019/7/1/marriage-stories-about-making-it-work