Rare Awareness Radio
Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
Episodes
May 23, 2026 • 43 mins
In this special wrap-up episode of Rare Awareness Radio’s CANPKU+ series, we reconnect with Nicole Pallone and Tanya Chute Nagy from the leadership team at CANPKU+ to reflect on the powerful conversations, stories, and lessons shared throughout the series.
Together, we explore the realities of living with PKU and rare metabolic disorders, the importance of advocacy and community, the ongoing fight for equitable access to treatment...
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May 3, 2026 • 30 mins
What if the biggest breakthroughs in rare disease aren’t just new treatments… but better data, stronger collaboration, and listening to patients?
In this powerful episode, we sit down with Dr. Beth Potter, a leading researcher at the University of Ottawa, to uncover the hidden engine driving rare disease progress: registries, research, and real-world evidence.
From the early days of newborn screening to today’s rapidly evolving t...
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April 19, 2026 • 42 mins
How can rare disease research become more human, more effective, and more accountable to the people it’s meant to serve?
In this powerful episode of Rare Awareness Radio, host Richard Juknavorian speaks with Maureen Smith, a lifelong rare disease advocate whose journey began as a child participant in clinical trials and evolved into decades of leadership in patient-partnered research. From her own lived experience with an ultra-ra...
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March 22, 2026 • 38 mins
For eight years, Melanie Colter searched for answers.
Her son Mason was living with Homocystinuria (HCU)—a rare metabolic disorder that often goes undetected—but no one knew it yet. There were no obvious warning signs, no dramatic turning points. Just a quiet, invisible risk beneath what appeared to be a normal childhood.
Until a routine eye appointment changed everything.
In this episode of Rare Awareness Radio, we sit down wit...
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March 14, 2026 • 45 mins
What happens when a routine newborn screening call changes your life forever?
In this episode of Rare Awareness Radio, host Richard Juknavorian speaks with two powerful advocates in the PKU community — Nicole Pallone and Tanya Chute Nagy from CanPKU+.
Both Nicole and Tanya are parents of children living with Phenylketonuria (PKU) — a rare genetic metabolic disorder that requires lifelong dietary management and constant vigilance....
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March 7, 2026 • 51 mins
Episode Description
In this episode of Rare Awareness Radio, host Richard Juknavorian sits down with John Adams, a passionate advocate and leader with CANPKU+, the Canadian organization supporting individuals and families affected by phenylketonuria (PKU) and related metabolic disorders.
John’s journey into rare disease advocacy began when his son was diagnosed with PKU shortly after birth through newborn screening. What started ...
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February 15, 2026 • 29 mins
Jordan Kruse | Fighting for a Cure for OTCD
What happens when a newborn appears perfectly healthy… and within days everything changes?
In this episode of Rare Awareness Radio, we speak with Jordan Kruse, a mother, educator, and advocate whose son Pruitt was diagnosed with OTCD (Ornithine Transcarbamylase Deficiency) — a rare genetic disorder that prevents the body from safely removing ammonia. Elevated ammonia levels can rapidly ...
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February 1, 2026 • 35 mins
Episode Title: Advancing Hope Through Science: Dr. Bruce Morimoto on V-ATPase Disorders
Episode Description:
In this episode of Rare Awareness Radio, host Richard Juknavorian speaks with Dr. Bruce Morimoto, a translational medicine expert with nearly 30 years of experience in CNS drug development, about the science, challenges, and hope surrounding ultra-rare V-ATPase–related neurological disorders.
Dr. Morimoto, who serves on t...
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January 17, 2026 • 38 mins
In this episode of Rare Awareness Radio, Richard speaks with Beth McKenzie and Dave Robertson, parents of Lucy and active members of the V-ATPase Alliance, a global, parent-led organization dedicated to research, advocacy, and community for families affected by rare V-ATPase genetic conditions.
Beth, a longtime special education teacher, and Dave, a third-year medical student who transitioned from a career in oil and gas after Luc...
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January 3, 2026 • 38 mins
In this episode of Rare Awareness Radio, Richard Juknavorian sits down with Ana Rita Moreira Moreira, Founder, Co-Founder, and President of the v-ATPase Alliance — a volunteer-led global advocacy and research movement she built alongside neuroscientist Luis Oliveira and advocate Kristin Anderson.
Ana Rita shares the story of their son Danny, one of only 27 children in the world living with an ultra-rare genetic mutation in the ATP...
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December 20, 2025 • 40 mins
In this episode of Rare Awareness Radio, host Richard Juknavorian sits down with Luis Oliveira, a neuroscientist, researcher at the Michael J. Fox Foundation, and co-founder of the V-ATPase Alliance—a global effort supporting families affected by ultra-rare genetic disorders linked to V-ATPase gene mutations.
Luis brings a rare dual perspective to the conversation: that of a scientist deeply trained in neurodegenerative disease re...
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November 30, 2025 • 40 mins
Rare Awareness Radio with Kristin Anderson (v-ATPase Alliance)
In this deeply moving and insightful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Kristin Anderson, co-founder of the v-ATPase Alliance, a global community of parents, caregivers, scientists, and advocates dedicated to one of the world’s ultra-rare neurodevelopmental disorders.
Kristin shares the powerful story of her son Jacob’s diagnostic...
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November 16, 2025 • 38 mins
In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Dr. Iazsmin Bauer-Ventura, an adult rheumatologist at the University of Chicago whose work centers on idiopathic inflammatory myopathies and interstitial lung disease (ILD).
As part of our ongoing myositis series, this conversation brings a crucial clinical and research perspective to a disease that is frequently misunderstood, misdiagnosed, ...
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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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