I’m Aware That I’m Rare: the phaware® podcast
Episode 562 - Ripla Arora, PhD

When Ripla Arora first studied TBX4 as a young PhD student, no one imagined this gene held secrets to life-threatening lung diseases. Now, years later, her early work is the foundation of a global effort to unlock the fetal origins of pulmonary hypertension.

I’m Aware That I’m Rare: the phaware® podcast
Episode 561 - Jeffrey Whitsett

Dr. Jeffrey Whitsett reflects on five decades in neonatal care, tracing the evolution from limited support for preemies to today’s cutting-edge genetic discoveries. Discover how rare gene mutations like TBX4 are reshaping our understanding of lung development and why collaboration with families is key to the next era of life-saving treatments.

I’m Aware That I’m Rare: the phaware® podcast
Episode 558 - Anton Morkin

When Anton Morkin’s son was diagnosed with “idiopathic” pulmonary hypertension, he refused to accept “no known cause” as an answer. What followed was a crash course in genetics, the discovery of a rare mutation, and the formation of a worldwide coalition, TBX4Life.

I’m Aware That I’m Rare: the phaware® podcast
Episode 551 - Russell Hirsch, MD

Dr. Russel Hirsch breaks down the core pillars of the PPHNet, from shared research to consistent care standards, and explains why the next chapter in pediatric pulmonary hypertension care must be written with families, not just for them through the PHriends family-led committee.

I’m Aware That I’m Rare: the phaware® podcast
Episode 544 - LaRae Hacker

LaRae Hacker never set out to become a rare disease advocate — but when her daughter’s TBX4 diagnosis left her feeling helpless, she found power in connection. Discover how TBX4Life became her anchor in uncertainty and why she believes parent-led advocacy is the key to progress in rare disease research.

I’m Aware That I’m Rare: the phaware® podcast
Episode 510 - Drs. Kevin and Heather Shannon

Co-Founder and Board Member, Drs. Kevin and Heather Shannon share the inspiring story of Camp del Corazon - a transformative summer camp for children with heart disease. Hear how one patient’s journey ignited a movement to create a safe, empowering space where kids can embrace their scars, form lifelong friendships, and experience the joy of camp without limits.

From the challenges of the first year to the life-changing moments that keep them going, the Shannons share how Camp del Corazon has touched countless lives and redefined what it means to live fully with a medical condition. #campdelcorazon #heartcamp #camplove

I’m Aware That I’m Rare: the phaware® podcast
Episode 504 - Janette Reyes, NP

Nurse Practitioner Janette Reyes from the Pulmonary Hypertension Program at the Hospital for Sick Children shares her extensive experience caring for pediatric patients with pulmonary hypertension. Reyes discusses the unique challenges and developmental considerations involved in treating children from infancy through their teenage years, as they transition to adulthood. Reyes also touches on the emotional and social struggles these young patients face, such as bullying and anxiety, and highlights the role of the multidisciplinary team in supporting their mental well-being.

I’m Aware That I’m Rare: the phaware® podcast
Episode 497 - Cynthia Neilson

Cynthia Neilson shares her journey as a mother raising her daughter Claire, who was diagnosed with pulmonary arterial hypertension (PAH) at a young age. Cynthia recounts the challenges she faced navigating the medical system, the emotional toll of dealing with an unexpected diagnosis, and the difficulties of balancing family life while ensuring her daughter received the best possible care. Cynthia emphasizes the value of connection, resilience, and advocacy for families dealing with rare diseases.

I’m Aware That I’m Rare: the phaware® podcast
Episode 491 - Sarah Stone

Sarah Stone shares the story of her family’s journey with rare medical conditions in North Central Minnesota. Sarah’s life took a turn when her daughter began showing unusual symptoms, eventually diagnosed with pulmonary hypertension, a rare condition complicated by her family’s genetic predisposition to HHT. As their medical challenges unfolded with two of her three children facing life-threatening conditions, Sarah discusses the trials of managing these complex issues while living in a remote area. She delves into the lessons learned, the importance of specialized medical care, and the determination to live life fully despite the circumstances.