Rare Awareness Radio
Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
Episodes
October 26, 2025 • 54 mins
Faith, Family, and the Three E’s: Holly Jones and the Power of Representation in the Myositis Community
Description:
In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Holly Jones — advocate, mother, and leader with The Myositis Association. Diagnosed with polymyositis at just 19 years old, Holly’s journey has been defined by faith, resilience, and an unwavering commitment to others.
Today,...
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October 11, 2025 • 40 mins
Dr. Namita Goyal — Diagnosing Hope: Advances in Myositis and Neuromuscular Care
Description:
In this episode of Rare Awareness Radio, host Richard Juknavorian sits down with Dr. Namita Goyal, Professor of Neurology and Director of Neuromuscular Medicine at UCI Health, to explore how advances in science and collaboration are reshaping the landscape for people living with myositis and related neuromuscular diseases.
Dr. Goyal refle...
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September 28, 2025 • 46 mins
Episode Title:
Navigating Myositis: Jen Swisher on Diagnosis, Advocacy, and Resilience
📝 Episode Description:
In this deeply moving episode of Rare Awareness Radio, host Richard Juknavorian sits down with Jen Swisher, a physician assistant, professor, mom of three, and dermatomyositis patient living with the TIF1-gamma autoantibody.
Jen shares her extraordinary journey through years of misdiagnoses, delayed care, and debilitatin...
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September 14, 2025 • 32 mins
Rare Awareness Radio — Episode Title: One Step at a Time: Ed McGrath on Love, Advocacy, and Life with Myositis
In this powerful episode of Rare Awareness Radio, we sit down with Ed McGrath, a passionate rare disease advocate, loving husband, and longtime partner to Marilyn McGrath, who lives with dermatomyositis—a rare autoimmune disease affecting the skin and muscles.
Ed shares their deeply personal journey, beginning with the e...
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September 1, 2025 • 30 mins
Turning Grief Into Purpose – Laurie Boyer, Chair of the Myositis Association
🟣 Rare Awareness Radio – A Podcast Dedicated to the Rare Disease Community
In this profoundly moving episode, Richard Juknavorian speaks with Laurie Boyer, Chairperson of the Myositis Association, about her personal and professional journey in rare disease advocacy.
After losing her brother to dermatomyositis with interstitial lung disease, Laurie tran...
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August 16, 2025 • 49 mins
In this episode of Rare Awareness Radio, host Richard Juknavorian sits down with Dr. Sam Young, Director of the Gene Therapy Center at the University of North Carolina at Chapel Hill.
From his early days as a Princeton football player turned molecular biology student, to training under Nobel laureates and leading pioneering labs across the U.S. and Europe, Sam has built a career at the cutting edge of gene therapy. His story is on...
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August 2, 2025 • 25 mins
Understanding CACNA1A: A Conversation with Dr. Kristin Baranano
Episode Description:
In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Dr. Kristin Baranano, a pediatric neurologist and neurogeneticist at Johns Hopkins University, to explore CACNA1A-related disorders—rare neurological conditions that affect children and adults across a complex spectrum of symptoms including ataxia, epilepsy, ...
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July 26, 2025 • 36 mins
Janet Vasquez on FAM177A1, Resilience, and Finding Strength Through Motherhood
Description:
In this heartfelt episode of Rare Awareness Radio, we sit down with Janet Vasquez, a devoted mother of two daughters diagnosed with FAM177A1, a rare neurodevelopmental disorder. Janet opens up about her family's journey—from the early signs and missed diagnoses to navigating daily life, advocacy, and the emotional toll of feeling isolated.
...
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July 20, 2025 • 33 mins
Pioneering Genetic Therapies for Rare Disorders | Dr. Fikri Birey | Rare Awareness Radio
Description:
In this powerful episode of Rare Awareness Radio, we sit down with Dr. Fikri Birey — neuroscientist, stem cell researcher, and Assistant Professor at Emory University — whose groundbreaking work is advancing the understanding and treatment of rare neurological disorders, including Timothy Syndrome and CACNA1A-related channelopathi...
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July 12, 2025 • 39 mins
Living on Both Sides of the Stethoscope — Dr. Deb Ondrasik on CACNA1A, Advocacy, and Hope
In this episode of Rare Awareness Radio, we sit down with Dr. Deb Ondrasik—pediatrician, rare disease advocate, and mother to a daughter living with CACNA1A-related epileptic encephalopathy.
Deb shares her extraordinary journey navigating life as both a healthcare provider and caregiver, and how her daughter’s diagnosis propelled her into ad...
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June 28, 2025 • 36 mins
A Voice for the Undiagnosed: Dr. Nikki Legro on FAM177A1, Genetic Advocacy, and Reimagining Maternal-Fetal Medicine -
In this powerful episode of Rare Awareness Radio, we sit down with Dr. Nicole “Nikki” Legro—a physician, researcher, and rising leader in the rare disease space. Currently a third-year OB/GYN resident at Georgetown University, Nikki reflects on the long and winding path that led to her groundbreaking work helping ...
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June 3, 2025 • 28 mins
In this episode of Rare Awareness Radio, host Richard Juknavorian speaks with Dr. Clement Chow, Associate Professor of Human Genetics at the University of Utah School of Medicine. Dr. Chow and his team are doing groundbreaking work in rare disease research using an unexpected but powerful model: the fruit fly.
We dive into Clement’s recent drug repurposing screen focused on FAM177A1 deficiency, a rare neurodevelopmental disorder. ...
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May 24, 2025 • 32 mins
🔬 “From ICU to Genome: Dr. Saquib Lakhani on CRELD1, Early Detection & Rare Disease Advocacy” | Rare Awareness Radio 🎧
In this powerful episode of Rare Awareness Radio, we sit down with Dr. Saquib Lakhani, Director of the Early Detection Program at Cedars-Sinai Guerin Children’s and a leading pediatric critical care physician.
Dr. Lakhani shares how a single ICU case launched a global collaboration that uncovered the link betwe...
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May 10, 2025 • 27 mins
In this powerful episode of Rare Awareness Radio, we sit down with Dr. Felix Chan, Assistant Professor of Pharmacology at the University of Birmingham and a leading voice in rare epilepsy research. Dr. Chan shares his remarkable journey from Indonesia to the U.K. and U.S., and how a life-changing encounter with a patient during his Ph.D. sparked his mission to better understand the devastating impact of rare epilepsies like CRELD1....
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April 27, 2025 • 44 mins
In this episode of Rare Awareness Radio, we sit down with Dana Brenner, a passionate advocate, parent, and community leader from CRELD1 Warriors. Dana shares her extraordinary journey navigating the complex world of rare disease diagnosis for her son Ray — a journey that spanned nearly a decade before discovering the cause: a newly identified mutation in the CRELD1 gene.
Dana opens up about the challenges of raising a child with a...
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April 20, 2025 • 22 mins
Fighting for Juju – A Father's Mission to Raise Awareness for CLN2 Batten Disease
In this powerful episode of Rare Awareness Radio, we sit down with Jonathan Vargas, co-founder of Juju and Friends: The CLN2 Warrior Foundation. Jonathan shares his family's emotional journey after his son, Juju, was diagnosed with CLN2 Batten disease—a rare, neurodegenerative condition.
From heartbreaking hospital stays to launching a nonprofit adv...
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March 19, 2025 • 64 mins
In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down in person with Maura McNamara, a devoted mother, healthcare professional, and now author, as she shares her family’s emotional journey through Opsoclonus-Myoclonus-Ataxia Syndrome (OMAS)—a rare and often misunderstood pediatric neurological condition.
Maura opens up about the terrifying diagnostic odyssey that began when her daughter Ellery was ju...
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March 14, 2025 • 32 mins
Unraveling OMAS: Advancing Research & Treatment with Dr. Ming Lim
Episode Description:
In this episode of Rare Awareness Radio, we sit down with Dr. Ming Lim, a leading expert in pediatric opsoclonus-myoclonus-ataxia syndrome (OMAS), a rare and complex neurological disorder that affects young children.
Dr. Lim, a pediatric neurologist at Evelina London Children’s Hospital, shares his insights into the challenges of diagnosing OMA...
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March 7, 2025 • 39 mins
In this profoundly moving episode of Rare Awareness Radio, host Richard Juknavorian sits down with Bhavna Dias, a passionate advocate for Opsoclonus-Myoclonus-Ataxia Syndrome (OMAS)—a rare and devastating autoimmune neurological disorder. Bhavna's journey with OMAS began when her daughter, Amara, was diagnosed at just 18 months old, sending their family on a harrowing path of misdiagnoses, medical uncertainty, and a relentless figh...
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February 27, 2025 • 44 mins
In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Rachel Heilmann, Co-Founder and President of The Rory Bell Foundation. Rachel shares her deeply personal journey from a career in clinical pharmacy to becoming a fierce advocate for families affected by ultra-rare diseases.
After her daughter, Rory, was diagnosed with NARS1, an extremely rare genetic disorder, Rachel was thrust into a world n...
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