Once Upon A Gene
ClaimedOnce Upon A GeneClaimed
Episodes
Once Upon A Gene
Claimed
Episodes of Once Upon A Gene
Mark All
Turning Kids into Superheroes of Science with O’Ryan HealthThe world of pediatric autoimmune and rare diseases can feel isolating—especially when answers live behind hospital walls or research centers far from home. But what if science came to
In this heartfelt conversation, Heather Straughter shares herprofound journey through grief after the loss of her son, Jake. She discussesthe pivotal moments that shaped her path, the importance of community support,and the ongoing nature of
Reimagining Pediatric Care with Imagine PediatricsFor families of medically complex kids, the healthcare system often feels broken—long hospital stays, insurance battles for basic needs, and constant caregiving without real support. But what
Service dogs are often associated with guiding the blind or assisting with mobility, but their impact goes far beyond traditional roles. In this episode, I’m joined by Sue Bresnahan, a pediatric nurse and rare mom, whose son has CACNA1C-related
I’m joined by Christian Henry, CEO of PacBio, a company leading the way in high-accuracy long-read sequencing. We break down what that means in simple terms, how this technology is helping families solve their diagnostic odyssey, and why some g
As caregivers, we give everything to our kids—but where does that leave us? Burnt out, exhausted, and running on fumes. If you’ve ever felt like you don’t even know where to start when it comes to your own health, this episode is for you.I’m t
In this powerful episode of Once Upon a Gene, I sit down with James Griffin, author of Breaking Silence: Living With Sickle Cell Anemia. Diagnosed at just two years old, James spent much of his life keeping his condition a secret, fearing how o
In this inspiring episode of Once Upon a Gene, I sit down with Samantha and Wesley Rogers, founders of Lottie’s Light Foundation, and proud parents of the incredible Lottie, who lives with a CERT1 mutation. The Rogers share the heartfelt story
In this episode, I sit down with Natalie Richheimer, a genetic counselor at JScreen, to dig into the world of preconception and prenatal genetic testing. We explore the basics of carrier screening, how to interpret results, and the importance o
Show Notes: Transforming Pediatric Rare Disease Research with Dr. Ramin EskandariIn this episode, I’m joined by Dr. Ramin Eskandari, a pediatric neurosurgeon at MUSC who is revolutionizing rare disease research through his innovative work with
Links & Resources:Follow Their Journey on Social MediaFacebook: Paxtons PioneersInstagram: Paxtons_PioneersKCAL News StoryWatch the in-depth feature on their family’s advocacy here: KCAL Rare Disease Coverage
Chasing Glimmers, is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the rare disease journey can be, but we also believe in the incredible power of connection, br
Dear Friends,The holidays can be a beautiful time of connection, joy, and celebration—but for caregivers, it can also be a season that amplifies the weight we carry every day. The expectations, the comparisons, the logistics of making life wor
2024 DSF Biennial Family & Professional ConferenceJune 20th to June 22nd. This three-day gathering united all those committed to improving the lives of individuals with Dravet syndrome – including families, caregivers, clinicians, researchers
Episode Highlights:Mindy Henderson, a powerful advocate for disability rights and the Director & Editor-In-Chief of MDA's Quest Media. Mindy shares her journey of breaking barriers in the skies, working tirelessly to make air travel more acces
ONCE UPON A GENE - EPISODE 133The Unique Expertise of a Genetic Counselor - Helping Rare Disease Individuals and Families Navigate Through Complex Emotions and Circumstances Like Guilt, Grief, and Shame with Mary-Frances GarberMary-Frances G
ONCE UPON A GENE - EPISODE 245Finding Strength in Friendship - Building In-Person Connections for Special Needs Moms with Colorado Mama Tribe - Mariah GillaspieMariah Gillaspie is the mom of Abby and Emma, who both have a genetic condition c
A collection of voicemails from rare disease parents who relate to you situation.
ONCE UPON A GENE - EPISODE 243Chasing Glimmers - Electric Love Disability RetreatsChasing Glimmers is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the rare d
ONCE UPON A GENE - EPISODE 242Choosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine ConnectionsI've been seeing so many online conversations around friendships lately and we've all experienced a ghost ship of
ONCE UPON A GENE - EPISODE 241Chasing Glimmers - What's Glimmering with Katie LloydChasing Glimmers, is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the rare
ONCE UPON A GENE - EPISODE 240A Mother's Mission - Project Baby Lion, ASO Therapy and the TNP02 Foundation with Yiwei SheYiwei She is a powerhouse mom to little Leo, the Founder of the TNP02 Foundation, a remarkable and brilliant advocate, a
ONCE UPON A GENE - EPISODE 239Navigating Physical and Emotional Stress and Noticing Where It Shows Up In Our Body As A Rare Disease Caregiver - With Christy FosterJoining me today is my sister, Christy Foster. We're talking about caregiver s
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