I'm Aware That I'm Rare: the phaware® podcast-logo

I'm Aware That I'm Rare: the phaware® podcast

Health & Wellness Podcasts

I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global

Location:

United States

Description:

I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global

Twitter:

@phaware

Language:

English

Contact:

8183953529


Episodes
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Episode 473 - Alvin Rocha MSN RN CPN PHN

6/17/2024
Alvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending the World PH Symposium to learn more ways to help the patients and families he cares for. 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 Share your story: info@phaware.com

Duration:00:10:18

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Episode 472 - Dunbar Ivy, MD

6/10/2024
In this episode, Dr. Dunbar Ivy, a pediatric cardiologist at the University of Colorado, discusses the upcoming World Symposium on Pulmonary Hypertension, where experts from around the world will gather to discuss the progress made and future directions. Dr. Ivy highlights the work of the pediatric pulmonary hypertension task force, which aims to develop expert opinions on various topics, including the role of different therapies for patients who have failed all available medical treatments. The task force also focuses on understanding genetic abnormalities and developmental lung disorders, defining pulmonary hypertension in neonates, and addressing the challenges of clinical trials for pediatric patients.The task force plans to publish their findings in 2024 and welcomes feedback from the medical community. 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 Share your story: info@phaware.com #phawareMD #PPHNet @PPHNet

Duration:00:06:00

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Episode 471 - Nola Martin

6/3/2024
Nola Martin shares her experience with pulmonary arterial hypertension (PAH). Nola describes the physical and mental challenges she faced, including fatigue, weight gain, and the need to ask for help. Nola emphasizes the importance of self-advocacy and fighting for one's own health. She recounts a situation where she had to push her doctor to listen to her concerns and change her medication. Despite the limitations, she has a better quality of life and encourages others to be their own advocates. Learn even more about Nola and PAH at www.OutnumberPAH.com. #SclerodermaAwarenessMonth #SayScleroderma @scleroderma @srfcure 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 Share your story: info@phaware.com

Duration:00:14:17

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Episode 470 - Eric Austin, MD

5/27/2024
In this episode, Dr. Eric Austin, a pediatric pulmonologist and pulmonary hypertension doctor, discusses the upcoming World Symposium on Pulmonary Hypertension, which will focus on various aspects of pulmonary hypertension research and clinical care. Dr. Austin is part of the task force on genetics and genomics, which aims to explore the genetic landscape of pulmonary hypertension and identify opportunities for future research and therapy development. He highlights the significance of the discovery of the BMPR2 gene and its role in pulmonary arterial hypertension (PAH), leading to the development of the gene-informed therapy sotatercept. 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 Share your story: info@phaware.com #phawareMD #PPHNet @PPHNet @VUMCchildren

Duration:00:12:42

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Episode 469 - Victoria McKinnon

5/20/2024
Victoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen’s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make the difficult decision to remove care. Victoria emphasizes the importance of communication and honesty from healthcare professionals, as well as the support and knowledge gained from joining online support groups. She also discussing her fundraising efforts to support research and find solutions for children with PH. Learn more about Victoria’s fundraising efforts: www.withlovefromowen.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 Share your story: info@phaware.com

Duration:00:16:22

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Episode 468 - Wolf Haley

5/13/2024
Haley (aka @Wolf Haley), who was diagnosed with pulmonary hypertension (PH) at 18 years old, shares her journey with the disease and how she has found healing and purpose through art and advocacy. Haley discovered her passion for art as a form of therapy, using watercolor to express her thoughts and emotions about living with PH. Haley also works as a TikTok manager for a nonprofit organization and has become involved in advocacy work, using her personal experiences to advocate for healthcare bills and share her story with legislators. She graduates from the community health worker program at UNM this month, and plans to continue studies in radiology technology. 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 Share your story: info@phaware.com

Duration:00:11:57

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Episode 467 - Dr. Jason Weatherald

5/6/2024
Dr. Jason Weatherald, a pulmonologist at the University of Alberta, discusses a study on the socioeconomic burden of pulmonary arterial hypertension (PAH) in Canada. The study, conducted through PHA Canada, surveyed PAH patients and their caregivers to understand how the disease affects their ability to work and perform daily activities. The results showed that a significant number of PAH patients were unable to work or had limited career options due to the disease. The study also highlighted the impact of PAH on caregivers, with many having to assist patients with daily activities. The findings emphasize the need for healthcare professionals to discuss the implications of PAH on patients' ability to work and access support. Read the report here: https://phacanada.ca/burden 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 Share your story: info@phaware.com @phacanada #phawareMD

Duration:00:08:33

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Episode 466 - Karen Martinez

4/29/2024
Karen Martinez, a mother from Eastvale, California, shares her experience with Camp del Corazon, a camp for children with congenital heart defects and lung disease. Her daughter attended camp for the first time at the age of seven and has been going every summer since. The camp offers events throughout the year and fosters lifelong connections among the campers. #campdelcorazon #heartcamp #camplove #supportagoodcause 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 Share your story: info@phaware.com

Duration:00:08:08

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Episode 465 - Joellen Brown

4/22/2024
In this episode, Joellen Brown shares her experience with pulmonary hypertension (PH) on the 15th anniversary of her diagnosis. Joellen was born with a hole in her heart and had her first open heart surgery at the age of two and a half. She believes she may have had PH since birth, but was not aware of it due to limited research in the 1950s. Joellen emphasizes the importance of having a supportive medical team and family, as well as being proactive in advocating for one's own health. She encourages newly diagnosed individuals to seek out support groups and emphasizes the need for early and appropriate treatment. 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 Share your story: info@phaware.com

Duration:00:09:29

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Episode 464 - Chelsea Price

4/15/2024
In this episode, Chelsea Price shares her experience living with pulmonary arterial hypertension (PAH). She emphasizes the importance of having a good support system, including her church community and connecting with other friends with PAH. Chelsea is grateful for the good days she has and strives to be an active mom for her children. Discover even more about Chelsea and PAH at www.OutnumberPAH.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 Share your story: info@phaware.com

Duration:00:11:11

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Episode 463 - Rajan Saggar, MD

4/8/2024
In this episode, Dr. Rajan Saggar, a pulmonologist at the University of California in Los Angeles, discusses the complications of pulmonary hypertension in various lung diseases. He explains that pulmonary hypertension can either be its own disease or can complicate other conditions such as heart disease or lung tissue diseases like emphysema or fibrosis. Dr. Saggar mentions a recent FDA-approved medication for pulmonary hypertension complicating lung tissue diseases, and ongoing research to develop more treatments. 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 Share your story: info@phaware.com #phawareMD @UCLAHealth

Duration:00:10:54

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Episode 462 - Sandeep Sahay, MD

4/1/2024
In this episode, Dr. Sandeep Sahay, a pulmonologist at Houston Methodist Hospital, discusses the concept of disease modification in the treatment of pulmonary hypertension (PH). He explains how traditional PH therapies focus on vasodilation, reducing pressure in the pulmonary artery by dilating blood vessels. However, newer therapies, such as sotatercept, work in different ways to reduce smooth muscle proliferation and thickness of the artery walls. Dr. Sahay suggests that if a drug is labeled as disease-modifying, it may be used in combination with existing PH medications from the beginning of treatment. However, he notes that further research, regulatory approval, and payer considerations are necessary for this to happen. @MethodistHosp @SandeepSahayMD 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 Share your story: info@phaware.com #phawareMD

Duration:00:08:45

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Episode 461 - UNISUS PAH Clinical Trial

3/25/2024
SPECIAL EDITION: Jonathan Hudson is a Global Trial Leader in Pulmonary Hypertension at Janssen Research & Development and is accompanied by colleague Josephine Garcia-Ferrer, Ph.D and Medical Manager. Jonathan and Josephine discuss Pulmonary Arterial Hypertension (PAH), the importance of clinical trials, what they entail, and share information on Janssen’s UNISUS Study for adults with PAH. Learn more about UNISUS Study with the Janssen Global Trial Finder. 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 Share your story: info@phaware.com

Duration:00:16:04

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Episode 460 - Lewis Romer, MD

3/18/2024
Dr. Lewis Romer discusses his work on the PPHNet's Kids MoD PAH Trial: Mono- vs. Duo-Therapy for Pediatric PAH patients. The Kids Mod PAH study is a research project funded by the NIH that aims to determine the best initial therapy for children with newly diagnosed pulmonary hypertension. The study compares the effectiveness of one medication (sildenafil) versus a combination of two medications (sildenafil and bosentan) in improving the quality of life and functional class of these children. The study team aims to provide enhanced care and support to the participants and their families throughout the study. The ultimate goal is to contribute to improving the care and outcomes for all children with pulmonary 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 Share your story: info@phaware.com #phawareMD #PPHNet @PPHNet @HopkinsMedicine Learn more about the Kids MoD PAH Trial: https://clinicaltrials.gov/ct2/show/NCT04039464

Duration:00:10:46

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Episode 459 - Morris Salem, MD

3/11/2024
In this episode, Dr. Morris Salem, a pediatric cardiologist, discusses his involvement with Camp del Corazon, a camp for children with congenital heart disease. Dr. Salem emphasizes the importance of addressing the emotional well-being of these patients, in addition to their physical health. He believes that the camp helps boost their self-confidence and allows them to have normal experiences. Dr. Salem also mentions the positive impact the camp has on parents, some of whom become involved in planning and fundraising for the organization. Dr. Salem is also a 2024 Gala del Sol Honoree. This gala is a major fundraiser for the camp taking place Saturday, April 13, 2024. Click Here for Tickets. Click Here to take part in the virtual auction. #galadelsol #campdelcorazon #heartcamp #camplove #supportagoodcause 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 Share your story: info@phaware.com

Duration:00:07:54

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Episode 458 - Brittany Valim

3/4/2024
In this episode, Brittany Valim shares her experience with pulmonary hypertension and her journey towards a heart and double lung transplant. She now lives a fulfilling life as a mother, student, and aspiring nurse. Brittany encourages others to embrace life and ride the wave, appreciating the rarity of their experiences. 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 Share your story: info@phaware.com

Duration:00:13:21

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Episode 457 - Cam Wells

2/26/2024
In this episode, stroke survivor and journalist, Cam Wells, discusses his mission to change the way disability stories are portrayed in the media. Cam also discusses his work in the disability community, including his involvement with the Italian Canadian HandiCapable Association, which provides sports and recreation opportunities for people with disabilities. Cam believes that disabilities and rare conditions affect everyone in some way and advocates for inclusivity and respect. #RareDiseaseDay @RareDiseases @DRPI_global @EasterSeals @CJAMFM 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 Share your story: info@phaware.com

Duration:00:13:26

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Episode 456 - Harm Bogaard, MD

2/19/2024
Harm Bogaard, MD, Ph.D., FAHA is a pulmonologist at the Amsterdam UMC. In this episode, he discusses the use of magnetic resonance imaging (MRI) in monitoring pulmonary hypertension patients. Dr. Bogaard explains that MRI is a valuable tool for assessing the function and structure of the right heart, which is crucial in determining the prognosis and long-term outcomes of patients with pulmonary 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 Share your story: info@phaware.com #phawareMD

Duration:00:06:13

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Episode 455 - Dawn Clarke

2/12/2024
Pulmonary hypertension patient, Dawn Clarke, a resident of the Mississaugas of the Credit First Nation in Southern Ontario. Despite her rare disease diagnosis, Dawn decided to focus on her mental health and explore her creative passions. She emphasizes the importance of looking after all aspects of one's well-being, including physical, mental, emotional, and spiritual health. She encourages others to find their purpose and make positive changes in their lives, even in the face of challenges. 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 Share your story: info@phaware.com @phacanada

Duration:00:14:46

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Episode 454 - Linda Wimmer

2/5/2024
New Jersey patient, Linda Wimmer, shares her experience with idiopathic pulmonary arterial hypertension. Linda discusses the various medications and lifestyle changes she has had to make to manage her condition. She also mentions dealing with depression and anxiety, as well as the challenges of accepting help from others. 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 Share your story: info@phaware.com

Duration:00:11:21