Explore every episode of the podcast I'm Aware That I'm Rare: the phaware® podcast
| Title | Pub. Date | Duration | |
|---|---|---|---|
| Episode 553 - Jasmine Wells | 30 Dec 2025 | 00:13:16 | |
You Can Grieve and Still Fight: Love, Loss, and Living with PAH | |||
| Episode 552 - Kevin Allen | 23 Dec 2025 | 00:27:12 | |
The Pulse of a Fighter: Survival, Stigma, and Shaking Up Healthcare | |||
| Episode 543 - Anthony Carrasco | 21 Oct 2025 | 00:15:28 | |
How I Survived Meth Addiction, Lung Failure, and Found Purpose This Special Edition Episode Sponsored by: Johnson & Johnson Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 452 - Lia Barros, NP | 22 Jan 2024 | 00:14:24 | |
Lia Barros, a nurse practitioner at the University of Washington, discusses the role of nurse practitioners in caring for patients with pulmonary hypertension. She emphasizes the importance of nurse practitioners in meeting the unique needs of patients with pulmonary hypertension and suggests that adopting collaborative care models can improve patient outcomes. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 451 - Sam Rayner, MD | 15 Jan 2024 | 00:09:14 | |
Dr. Sam Rayner is an assistant professor and pulmonary hypertension specialist at the University of Washington. In this episode, he discusses the different ways physicians can get involved in pulmonary hypertension research. He explains that he is a physician scientist, dividing his time between patient care and scientific research focused on PH. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 450 - Harm Bogaard, MD | 08 Jan 2024 | 00:11:10 | |
Harm Bogaard, MD, Ph.D., FAHA is a pulmonologist at the Amsterdam UMC. In this episode, he discusses the role of genetic testing in the treatment of patients with pulmonary hypertension at its role in clinical research. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 449 - Sharon Tokonitz | 28 Dec 2023 | 00:05:54 | |
Six years ago, Canadian pulmonary hypertension patient Sharon Tokonitz was rushed to the hospital with a massive bilateral unprovoked pulmonary embolism. She discusses her road to recovery from being bedridden to returning to an active life thanks to pulmonary rehab. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 448 - Saire Gonzalez, RN and Kimberly Hudson, RN | 21 Dec 2023 | 00:10:37 | |
Kimberly Hudson and Saire Gonzalez are registered nurses with CVS Specialty Pharmacy who work with patients with pulmonary hypertension (PH). They provide support, education, and guidance to patients who are newly diagnosed with PH and help them navigate their drug therapies and lifestyle changes. They also highlight the role of caregivers and the availability of support groups for both patients and caregivers. @CVSHealth Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 447 - Raymond L. Benza, MD | 18 Dec 2023 | 00:05:46 | |
In this episode, Dr. Raymond Benza, a Professor of Medicine at the Icahn School of Medicine at Mount Sinai, discusses dual therapy in the treatment of pulmonary hypertension (PH) through the concept of risk stratification. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 446 - Nancy Halnon, MD | 11 Dec 2023 | 00:18:26 | |
In this episode, pediatric cardiologist, Nancy Halnon, MD, discusses treatment goals for pulmonary hypertension, the various routes of administration and the importance of using combination therapy to improve survival. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 445 - Angela Bates, MD | 04 Dec 2023 | 00:12:20 | |
In this episode, Angela Bates, MD from Stollery Children's Hospital, discusses the importance of incorporating quality of life into the management strategies for pediatric pulmonary hypertension patients. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 444 - Vinicio de Jesus Perez, MD | 27 Nov 2023 | 00:17:59 | |
In this episode, Vinicio de Jesus Perez, MD discusses some of the most recent clinical developments in the field of pulmonary hypertension, highlighting new and ongoing clinical trials that are of great interest to the medical community as well as caregivers and patients looking forward to novel ways of treating their condition. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 443 - Peter Leary, MD | 20 Nov 2023 | 00:11:19 | |
In this episode, Peter Leary, MD talks about factors that might lead to over-treatment, under-treatment, or "just-right" treatment and emphasizes that guidelines are important but there is no "one-size fits all" approach to treatment of pulmonary hypertension. Peter Leary is the director of the pulmonary vascular disease program at the University of Washington. He also has a PhD in epidemiology and is very interested in clinical and translational research for patients with pulmonary hypertension locally, nationally, and internationally. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 542 - Brandon Jakubowski, MD | 14 Oct 2025 | 00:11:57 | |
Treating Meth-Associated PAH Without Judgment This Special Edition Episode Sponsored by: Johnson & Johnson | |||
| Episode 442 - Sanjay Mehta, MD | 13 Nov 2023 | 00:27:49 | |
In this episode, PHA Canada Board Director, Sanjay Mehta, MD discusses the recently updated 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension, the gaps in understanding and the reasons why. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 441 - Karina Macias | 08 Nov 2023 | 00:10:55 | |
In this episode, pulmonary hypertension pediatric care partner, Karina Macias, discusses her son Tito's PH journey and why she dedicated her life to becoming a certified nurse assistant. Tito was named Stanford's Race Against PH 2023 Pediatric PH Courage Award recipient. #raceagainstph @phaatstanford Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 440 - Mitesh Thakrar, MD | 06 Nov 2023 | 00:13:06 | |
Mitesh Thakrar, MD is a Clinical Associate Professor at the University of Calgary and the current Deputy Medical Director of the Southern Alberta Transplant Program. In this episode, Dr. Thakrar discusses titration of pulmonary arterial hypertension therapeutics. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 439 - Sarah Sizemore | 30 Oct 2023 | 00:08:59 | |
Former pulmonary hypertension patient, Sarah Sizemore discusses life 1 year post-lung transplant surgery. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 438 - Kristina Kudelko, MD | 27 Oct 2023 | 00:06:29 | |
Kristina Kudelko, MD, is the Director of Education and Stanford's Vera Moulton Wall Center. She discusses the 23rd annual #RaceAgainstPH, how it raises awareness and funds for this devastating rare disease and the importance of PH Courage Award winners. Don't miss the 23rd Annual Race Against PH at November 5 hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. Click here to learn more. #raceagainstph @phaatstanford Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 437 - Steve Smith | 23 Oct 2023 | 00:15:02 | |
In this episode, pulmonary hypertension patient, Steve Smith discusses the importance of a good support team and how he tackled anxiety and his passion for musical theater. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 436 - Kendra Meneghetti | 16 Oct 2023 | 00:10:27 | |
In this episode, pulmonary hypertension patient and Stanford's Race Against PH 2023 Adult PH Courage Award recipient, Kendra Meneghetti, discusses her lifelong battle with PH, the challenge of receiving a transplant during Covid, and how her band provides a unique outlet by releasing her trauma through music. Don't miss the 23rd Annual Race Against PH at November 5 hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. Click here to learn more. #raceagainstph @phaatstanford Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 435 - Harrison "Hap" Farber, MD | 09 Oct 2023 | 00:04:57 | |
In this episode, Harrison "Hap" Farber, MD discusses PHenomenal Hope 2023. Join renowned experts as well as rising young investigators and allied healthcare providers as they share original research. This symposium offers a combination of oral presentations, expert panel discussions, and poster sessions in an environment that encourages collaboration and a deeper exploration of patient-centered research. This even takes place December 15, 2023 Omni Boston Hotel at the Seaport For more info and to register, visit: www.PAH2023.com Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 434 - Joan Gibson | 02 Oct 2023 | 00:14:52 | |
Canadian pulmonary hypertension care partner, Joan Gibson discusses her daughter Jane's path to diagnosis, decision to embrace surrogacy, and her road to recovery after two PH related strokes. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 433 - Jo-Anne Mainwood | 25 Sep 2023 | 00:07:52 | |
Pulmonary hypertension patient, Jo-Anne Mainwood, is a Canadian school teacher who couldn't keep up with her students, friends and family. After a long journey of misdiagnosis, Jo-Anne details why PH is not a one-size-fits-all disease. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 541 - Nicholas Kolaitis, MD | 07 Oct 2025 | 00:14:45 | |
The Face of Addiction Isn't Who You Think It Is This Special Edition Episode Sponsored by: Johnson & Johnson | |||
| Episode 432 - Jennifer Gendron | 18 Sep 2023 | 00:12:43 | |
On the 14th anniversary of her son's life-saving lung transplant, Canadian pulmonary hypertension care partner, Jennifer Gendron discusses how the PH landscape has changed over the past 20 years and life post-surgery. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 431 - Don Downey | 11 Sep 2023 | 00:09:06 | |
Canadian pulmonary hypertension care partner, Don Downey, discusses his wife Kathy's road to diagnosis -- which was confirmed on Friday March 13, 2020 -- the day the world shut down and how they navigated her new normal during lockdown. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 430 - Carol Doyle Ploughman | 04 Sep 2023 | 00:14:57 | |
15 years ago, after the birth of her 2nd child, Canadian pulmonary hypertension patient, Carol Doyle Ploughman was told she had only two years to live. Now, a decade and a half later, on her birthday, Carol discusses how she has maintains a healthy and active lifestyle and the importance of clinical trials for PH patients. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 429 - Colleen Carroll | 28 Aug 2023 | 00:06:45 | |
Canadian pulmonary hypertension patient, Colleen Carroll was wrongly diagnosed with severe anxiety and asthma before she ever heard the words "pulmonary hypertension." Now she faces each day with a positive attitude, a good diet, exercise regimen, and the power of her faith. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 428 - Jane Macleod | 21 Aug 2023 | 00:06:54 | |
Canadian pulmonary hypertension and scleroderma patient, Jane Macleod is a retired RN. She discusses reasons for her delayed diagnosis, the importance of pulmonary rehab, and the challenges of living a her new normal. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 427 - Vanda McLean | 14 Aug 2023 | 00:10:50 | |
Canadian pulmonary hypertension patient, Vanda McLean was forced into early retirement due to her diagnosis. She discusses how she navigates depression, the importance of support and how she faces an uncertain future. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 426 - Jas James | 07 Aug 2023 | 00:06:14 | |
Long-term Canadian pulmonary hypertension and lupus survivor, Jas James discusses survivor's guilt and the importance of both emotional and physical support from friends, family and fellow patients. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 425 - Susan Cosenzo | 31 Jul 2023 | 00:10:38 | |
Canadian pulmonary hypertension patient, Susan Cosenzo discusses her PH diagnosis, the struggles of being a single mom living in government housing and how she overcame alcohol addiction. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 424 - Kaitlyn Salonga | 24 Jul 2023 | 00:08:35 | |
Canadian pulmonary hypertension patient, Kaitlyn Salonga discusses the impact PH has had on her job, her relationship and her mental wellbeing. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 423 - Jane Sernoskie | 17 Jul 2023 | 00:05:38 | |
PHA Canada Patient Ambassador, Jane Sernoskie discusses her pulmonary hypertension diagnosis and becoming a mom through surrogacy. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 540 - Peter J. Leary, MD | 30 Sep 2025 | 00:18:27 | |
How Stigma Blocks Meth-PAH Treatment and How to Stop It | |||
| Episode 422 - Kristine Ritchie | 10 Jul 2023 | 00:11:16 | |
Canadian Pediatric PH Care Partner, Kristine Ritchie, discusses her son Brendan's 10 plus year journey with pulmonary hypertension, the importance of self-care and the impact PH has on her entire family. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 421 - Eric Austin, MD | 26 Jun 2023 | 00:16:10 | |
Eric Austin is the Director of the Vanderbilt Pediatric Pulmonary Hypertension Program at Vanderbilt University Medical Center's Monroe Carell Jr. Children's Hospital. He is also a member of the adult program's Vanderbilt Pulmonary Hypertension Clinical and Research Program, with whom he leads and/or participates in various translational research studies. In this episode, Dr. Austin discusses pulmonary hypertension associated with developmental lung disorder. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 420 - Lew Romer, MD | 19 Jun 2023 | 00:15:52 | |
Lew Romer, MD is a Professor of Anesthesiology and Critical Care Medicine, Johns Hopkins Medicine in Baltimore, Maryland. Dr. Romer discusses the importance of clinical trials in the pediatric pulmonary hypertension population and his work on the PPHNet's Kids MoD PAH Trial: Mono- vs. Duo-Therapy for Pediatric PAH patients. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Learn more about the Kids MoD PAH Trial: https://clinicaltrials.gov/ct2/show/NCT04039464
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| Episode 419 - Brin Marks | 12 Jun 2023 | 00:10:02 | |
PHA Canada Ambassador and pulmonary arterial hypertension patient, Brin Marks, discusses her road to diagnosis, her strategies for staying positive and why she wants to be a voice for change for pediatric PH patients everywhere. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 418 - Sanjay Mehta, MD | 05 Jun 2023 | 00:15:49 | |
PHA Canada Board Director, Sanjay Mehta, MD, on 15 years of inspiring achievements in advocacy, research, and community support for the 2023 National PH Community Conference taking place June 9-10 in Ottawa, ON and what lies ahead for the future. PHA Canada invites you to celebrate 15 years of inspiration at this year's National Community Conference June 9-10! Can't join in person? Register as a virtual participant! Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 417 - Nicole Dempsey | 29 May 2023 | 00:06:42 | |
Pulmonary Hypertension patient and PHA Canada Board Chair, Nicole Dempsey, celebrates 15 years of inspiring achievements in advocacy, research, and community support for the 2023 National PH Community Conference taking place June 9-10 in Ottawa, ON. PHA Canada invites you to celebrate 15 years of inspiration at this year's National Community Conference June 9-10! Can't join in person? Register as a virtual participant! Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 416 - Katharine Clapham, MD | 22 May 2023 | 00:08:51 | |
Katharine Clapham, MD is an Assistant Professor in the Division of Cardiovascular Medicine at University of Utah Health. @UofUHealth In this episode, Dr. Clapham discusses methamphetamine-associated pulmonary arterial hypertension. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 415 - Uli Campbell | 15 May 2023 | 00:07:08 | |
In this episode, newly diagnosed pulmonary arterial hypertension patient, Uli Cambell, discuss her rollercoaster of emotions and how educating herself about PH has given her hope in navigating and advocating for her rare disease. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||
| Episode 414 - Elise Whalen, MSN, APRN | 08 May 2023 | 00:07:52 | |
Elise Whalen is a Family Nurse Practitioner from Texas Children's Hospital's Pulmonary Hypertension program. In this episode, she discusses the importance of mental health screening and how the PPHNet is undertaking a multi-center study addressing the impact anxiety and depression has on their pediatric PH patients. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 413 - Nidhy P. Varghese, MD | 01 May 2023 | 00:18:45 | |
Nidhy P. Varghese, MD is a pediatric pulmonologist and the Medical Director of the pediatric pulmonary hypertension program from Texas Children's Hospital. In this episode, Dr. Varghese discusses transitioning from a pediatric PH care team to an adult medical care team. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware | |||
| Episode 539 - Vinicio de Jesus Perez, MD | 23 Sep 2025 | 00:21:18 | |
The Hidden Epidemic: Meth and PH This Special Edition Episode Sponsored by: Johnson & Johnson | |||
| Episode 412 - Roberta Keller, MD | 24 Apr 2023 | 00:11:20 | |
Roberta Keller, MD is a neonatologist, an expert in caring for critically ill newborns, and a member of the multidisciplinary pediatric pulmonary hypertension team from UCSF's Benioff Children's Hospital. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||
| Episode 411 - Steven Abman, MD | 17 Apr 2023 | 00:10:50 | |
Dr. Steven Abman is Professor of Pediatrics-Pulmonary Medicine and Director of the Pediatric Heart Lung Center (PHLC) at the University of Colorado Denver Anschutz School of Medicine and Children's Hospital Colorado. In this episode, Dr. Abman gives an overview of The Pediatric Pulmonary Hypertension Network (PPHNet), a network of clinical specialists, researchers, and centers bringing a collaborative and multidisciplinary approach to improving care for children with pulmonary vascular disease. He also discusses takeaways from the 15th International Neonatal & Childhood Pulmonary Vascular Disease Conference. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||
| Episode 410 - Shannin Strom | 10 Apr 2023 | 00:07:44 | |
Pediatric PH Caregiver Shannin Strom discusses navigating her daughter Zoe's pulmonary hypertension disease and the importance of IEPs (both medically and educationally) in Zoe's academic career. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||