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I'm Aware That I'm Rare: Lindsey and Josh Belt

I'm Aware That I'm Rare: Lindsey and Josh Belt

In January of 2013, Lindsey and Josh Belt’s 5 year-old son Joel was diagnosed with a severe lung disease called idiopathic pulmonary hypertension (PH). Since Joel's diagnosis, the Belts have been on a mission to spread the message of HOPE! In 2013 & 2014, they hosted Color PHor A Cure 5K to raise awareness for pediatric PH research. The passionate desire to spread hope and raise awareness for PH also led the couple to create The Anchored In Hope Shop. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod

I'm Aware That I'm Rare: Tara Suplicki

I'm Aware That I'm Rare: Tara Suplicki

Pulmonary hypertension patient Tara Suplicki was misdiagnosed with “exercise induced asthma” for twenty years. Two decades later, Tara has become a passionate support group leader and PH advocate focused on helping newly diagnosed patients and educating the public about the importance of early diagnosis. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod

I'm Aware That I'm Rare: Greg Fuller

I'm Aware That I'm Rare: Greg Fuller

He used to climb mountains, but now CTEPH patient Greg Fuller is being forced to set new goals for himself because of his rare illness. Though life has dealt him a bad hand, Greg is redefining what is possible in spite of PH. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod

I'm Aware That I'm Rare: Gerry Fischer

I'm Aware That I'm Rare: Gerry Fischer

At the age of three, Gerry Fischer’s daughter Maleen was diagnosed with pulmonary hypertension and, as there was no treatment for this fatal disease at the time in Austria, the doctors sent her home. Her life expectancy was only a few years. In the twenty plus years since her diagnosis, Gerry went on to help raise over ten million dollars in research funds during his tenure as the head of the European Pulmonary Hypertension Association. Maleen, now 21, wrote a book about her PH journey with the inspirational message: “Every person’s life and fate has positive aspects. You only have to search for them.

I'm Aware That I'm Rare: Gary Bruce

I'm Aware That I'm Rare: Gary Bruce

Pulmonary hypertension and COPD patient, Gary Bruce discusses how PH has impacted his life.  Gary finds strength through his faith and through the freedom of the open road to cope with his rare disease diagnosis. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware

I'm Aware That I'm Rare: Margaret Owens

I'm Aware That I'm Rare: Margaret Owens

CTEPH patient Margaret Owens shares her pulmonary hypertension diagnosis story and how he life changed after she received a V/Q Scan and surgery to cure her rare form of PH. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware

I'm Aware That I'm Rare: Jenny Janzer

I'm Aware That I'm Rare: Jenny Janzer

Long term survivor Jenny Janzer shares her pulmonary hypertension diagnosis story and how she has battled depression in her tween and teen years along with PH. Jenny discusses how she uses her art not only as therapy, but to express herself and raise PH awareness.  Check out Jenny's Etsy profile: www.etsy.com/shop/MostPulpListen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware

I'm Aware That I'm Rare: Jim White, MD

I'm Aware That I'm Rare: Jim White, MD

R. James White, MD, PhD from University Rochester Medical Center talks about his fifteen year career treating pulmonary hypertension, the importance of PH awareness to the medical community and his gratitude to all patients who participate in clinical research studies. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware

I'm Aware That I'm Rare: Dr. Steven Abman, MD

I'm Aware That I'm Rare: Dr. Steven Abman, MD

Dr. Steven Abman is Professor of Pediatrics and Director of the Pediatric Heart Lung Center (PHLC) at the University of Colorado Denver Anschutz School of Medicine and Children’s Hospital Colorado. Dr. Abman founded and continues to serve as Director of the Pediatric Pulmonary Hypertension Network (PPHNet), a multicenter clinical research and care group consisting of 10 leading PH centers from throughout North America, and initiated and led a joint American Heart Association/American Thoracic Society working group to establish the first joint guidelines for the care of children with pediatric pulmonary hypertension. Dr. Abman also serves on phaware’s Medical Advisory Board. 

I'm Aware That I'm Rare: Sound Bath Guided Meditation

I'm Aware That I'm Rare: Sound Bath Guided Meditation

Eric Mellgren and Jennifer Schaefer discuss and perform a Sound Bath Guided Mediation. A Sound Bath is a form of guided meditation that can help relieve anxiety and stress. The vibrations and tones are created with “singing” bowls made of quartz crystal or synthesized ambient tones all tuned to 432 Hz. Click to watch Eric perform the Sound Bath. 

I'm Aware That I'm Rare: Kevin Lee Burger

I'm Aware That I'm Rare: Kevin Lee Burger

Kevin Lee Burger shares his story about being diagnosed with pulmonary hypertension, the importance of PH awareness and the reasons that led him to create an online support system to meet the needs of men diagnosed with this rare disease - The PH Men's PHight Club on facebook. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware  

I'm Aware That I'm Rare: Andy Sagraves

I'm Aware That I'm Rare: Andy Sagraves

10-year-old pulmonary hypertension patient, Andy Sagraves discusses living a life of compromise, theoretical physics and how being diagnosed with a rare disease is a gift. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware

 
 
 
 

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