I’m Aware That I’m Rare: the phaware® podcast
Episode 564 - Neal McDermott and Steve Mathai, MD

Scleroderma and PAH: Patient, Neal McDermott and Dr. Steve Mathai unpack how the intersection of two rare diseases requires trust, early action, and deeply personalized care. This episode explores what happens when medical expertise meets patient resilience, and why collaboration and clinical trials matter more than ever in changing the outcomes of rare disease.

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 560 - Luke Stockdale

What started as routine investigations into hereditary knee problems turned into a life-altering discovery for Luke Stockdale and his family - a TBX4 gene mutation linked to pulmonary arterial hypertension (PAH). In this episode, Luke shares how his mother’s journey through years of respiratory care led to a rare diagnosis, and how it’s changed the course of his entire family’s future. With candor and urgency, he discusses the emotional weight of genetic testing, the inconsistencies in clinical care, and his mission to advocate for early detection and standardized monitoring.

I’m Aware That I’m Rare: the phaware® podcast
Episode 559 - Matina Prapa, MD, PhD and Olivier Danhaive, MD

Rare diseases thrive in isolation. TBX4Life is changing that. In this episode, Drs. Prapa and Danhaive share how international collaboration is creating real-time change for patients. From newborn screening to natural history studies to rethinking how we talk about genetic testing, they’re helping create a roadmap to a cure.

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 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 542 - Brandon Jakubowski, MD

Dr. Brandon Jakubowski takes us into the underrecognized world of stimulant-induced pulmonary arterial hypertension. From misdiagnoses to under-prescribing life-saving therapies, he lays out the systemic gaps and stigmas preventing patients from getting the care they need.

I’m Aware That I’m Rare: the phaware® podcast
Episode 540 - Peter Leary, MD

Patients with methamphetamine-associated-PAH often arrive at clinics already carrying heavy shame. But shame shouldn’t be part of their medical history. In this compelling episode, Dr. Peter Leary explains how stigma — from both society and providers — can delay life-saving care. Learn how a change in mindset, language, and compassion can transform outcomes for a neglected and growing patient population.

I’m Aware That I’m Rare: the phaware® podcast
Episode 538 - John Kingrey, MD

Dr. John Kingrey exposes the rising crisis of meth-induced pulmonary hypertension, a condition spreading fast across the U.S. He challenges misconceptions, highlights urgent research, and stresses the need for compassion in treating both PAH and addiction.

I’m Aware That I’m Rare: the phaware® podcast
Episode 535 - Akshay Muralidhar, MD

In this episode, Dr. Akshay Muralidhar, Co-Director of the Pulmonary Hypertension Center of Excellence at Arizona Pulmonary Specialist in Phoenix, discusses the importance of having a specialized center for pulmonary hypertension. Dr. Muralidhar also highlights the challenges of managing patients with substance abuse issues, particularly methamphetamine use. Dr. Muralidhar emphasizes the importance of access to care, particularly for underserved communities, and the need for outreach programs to ensure that all patients have access to treatment options.

I’m Aware That I’m Rare: the phaware® podcast
Episode 534 - Raj Parikh, MD

Dr. Raj Parikh from Hartford Hospital discusses building on foundational pathways with treatment options for Pulmonary Arterial Hypertension (PAH) patients. He also emphasizes the value of clinical trials as well as the importance of a good doctor/patient relationship.

I’m Aware That I’m Rare: the phaware® podcast
Episode 529 - Tijana Milinic, MD & Lia Barros, DPN

Dr. Tijana Milinic and Lia Barros, DNP, from the University of Washington take a deep dive into the world of pulmonary arterial hypertension (PAH) clinical trials and discuss why diversity and inclusion matter. They explore the hidden biases in medical research and the real-world consequences of exclusion.

I’m Aware That I’m Rare: the phaware® podcast
Episode 528 - Lana Melendres-Groves, MD

Dr. Lana Melendres-Groves dives into her research on racial and ethnic disparities in PAH treatment. From differences in medication access to the role of social determinants of health, she explores how systemic barriers impact care and what steps can be taken to ensure equity and inclusivity in PAH management.

I’m Aware That I’m Rare: the phaware® podcast
Episode 524 - Jason Weatherald, MD

Think only people in clinical trials help advance medicine? Think again. Dr. Jason Weatherald explains how your everyday clinic visits — from walk tests to how you feel — can help shape the future of pulmonary hypertension treatment. Learn what “real-world evidence” is and why your story matters more than you think.

I’m Aware That I’m Rare: the phaware® podcast
Episode 516 - Ron Zolty, MD

Dr. Ron Zolty delves into groundbreaking advancements in treating pulmonary arterial hypertension. From the historical use of vasodilators to the revolutionary promise of sotatercept and seralutinib, Dr. Zolty unpacks how science is moving closer to halting - and possibly even reversing - PAH.personalized treatment approaches.

I’m Aware That I’m Rare: the phaware® podcast
Episode 512 - Jimmy Ford, MD

Jimmy Ford, MD discusses the 7th World Symposium on Pulmonary Hypertension and his work on the Exploring the Patient Perspective in PH Task Force.

I’m Aware That I’m Rare: the phaware® podcast
Episode 564 - Harrison “Hap” Farber, MD

Harrison “Hap” Farber, MD gives a recap of PHenomenal Hope 2024, emphasizing its patient-centered approach to pulmonary hypertension (PH) research. He highlights patient stories, particularly Eric Borstein’s inspiring journey of recovery and advocacy, and underscores the importance of patient-provider collaboration. Additionally, he addresses challenges in PH care, such as inclusivity in clinical trials, the role of AI in medicine, and the complexities of treating patients with substance use disorders.

I’m Aware That I’m Rare: the phaware® podcast
Episode 505 - Jodi Berry

On the 28th anniversary of her PH diagnosis, Jodi Berry shares her journey of living with pulmonary hypertension. Despite facing an initial prognosis of only a few years to live, Jodi’s determination and the support of her family, friends, and healthcare professionals helped her manage her condition while maintaining an active lifestyle. Over time, advancements in treatments and her proactive participation in clinical trials provided hope and improved her quality of life.

I’m Aware That I’m Rare: the phaware® podcast
Episode 500- Jason Weatherald, MD

In our 500th episode, Dr. Jason Weatherald, a pulmonologist at the University of Alberta in Canada, discusses a project called CRAVE (Canadian Right Ventricular Failure Adaptive Platform) to address the lack of treatments for right heart failure in patients with pulmonary hypertension.

He explains that platform trials, which allow for multiple interventions to be tested simultaneously, are more efficient and offer a higher chance of receiving a potential therapy compared to traditional clinical trials.

Dr. Weatherald emphasizes the importance of patient involvement in research and highlights the use of phaware’s HeartWorks mobile app, which allows patients to measure their walking distance at home, as a potential endpoint in the trial.