Episode 346 - Jamie and Diana Cruz - Race Against PH
I'm Aware That I'm Rare: the phaware® podcast
Release Date: 10/26/2020
Khushboo Goel, MD phaware® interview 563
I'm Aware That I'm Rare: the phaware® podcast
The Hidden Daily Battles of Pulmonary Hypertension Patients Behind the clinical charts and heart catheterizations lies a world of emotional, financial, and physical challenges that PH patients face every day. Dr. Khushboo Goel opens up about what she’s learned from patients in support groups—and how it’s reshaping her approach to care. My name is Dr. Khushboo Goel. I am a pulmonary hypertension specialist here at Cedars-Sinai. I'm part of the faculty for the Division of Pulmonary and Critical Care Medicine. I came to Cedars in route, multiple states in terms of my medical training....
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Episode 563 - Khushboo Goel, MD
I'm Aware That I'm Rare: the phaware® podcast
The Hidden Daily Battles of Pulmonary Hypertension Patients Behind the clinical charts and heart catheterizations lies a world of emotional, financial, and physical challenges that PH patients face every day. Dr. Khushboo Goel opens up about what she’s learned from patients in support groups—and how it’s reshaping her approach to care. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: .
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Ripla Arora, PhD - phaware® interview 562
I'm Aware That I'm Rare: the phaware® podcast
Why the Clues to Pulmonary Hypertension Start Before Birth 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. My name is Ripla Arora and I’m an Associate Professor in the OB-GYN department and the biomedical engineering department at Michigan State University. I also am part of the Institute of Quantitative Health Science and Engineering. I’m a developmental biologist and a geneticist...
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Episode 562 - Ripla Arora, PhD
I'm Aware That I'm Rare: the phaware® podcast
Why the Clues to Pulmonary Hypertension Start Before Birth 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. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: .
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Jeffrey Whitsett, MD - phaware® interview 561
I'm Aware That I'm Rare: the phaware® podcast
Cracking the Code: How Genetics Is Rewriting Neonatal Medicine 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 Jeffrey Whitsett. I’m a neonatologist at Children’s Hospital Medical Center. I am the Director of the Perinatal Institute. I’ve been there 50 years, taking care of newborns...
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Episode 561 - Jeffrey Whitsett, MD
I'm Aware That I'm Rare: the phaware® podcast
Cracking the Code: How Genetics Is Rewriting Neonatal Medicine 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. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: ...
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Luke Stockdale - phaware® interview 560
I'm Aware That I'm Rare: the phaware® podcast
From Knee Pain to Gene Discovery: One Family’s Unexpected Diagnosis 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...
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Episode 560 - Luke Stockdale
I'm Aware That I'm Rare: the phaware® podcast
From Knee Pain to Gene Discovery: One Family’s Unexpected Diagnosis 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...
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Drs. Matina Prapa and Olivier Danhaive - phaware® interview 559
I'm Aware That I'm Rare: the phaware® podcast
How a Global Team Is Rewriting the TBX4 Playbook 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. Matina Prapa, MD, PhD: Hi, my name is Martina Prapa. I’m a clinical geneticist. I work in London, at few centers, St. George’s and Royal Brompton Hospital. I’ve been a geneticist for three years now as a...
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Episode 559 - Drs. Matina Prapa and Olivier Danhaive
I'm Aware That I'm Rare: the phaware® podcast
How a Global Team Is Rewriting the TBX4 Playbook 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. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: .
info_outlineJaime Cruz is a caregiver to his daughter, Diana, who is this year's Pediatric Courage Award Winner of the 20th Annual Virtual Race Against PH 5K/Fun Run, taking place November 1st, 2020.
In this episode, they discuss Diana's pulmonary hypertension diagnosis and how she navigates this disease. #raph20virtual
Register for the 20th Annual Race Against PH 5K: med.stanford.edu/raceagainstph
Register to watch the LIVESTREAM event Sunday 11/1 @ 9am PT:
https://us02web.zoom.us/
Enter this week's Costume Contest (Oct 26-30)
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @PHatStanford