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

Twice Transplanted. Still Dancing. Still Following Her Passion. Most people never face one life-saving transplant. Jennifer Lombardi has survived two. She's lived through heart failure, bloodstream infections, chronic rejection, and unimaginable grief. Today, when the music hits and she steps onto a dancefloor, adrenaline floods her veins and she remembers why she fought so hard. 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: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.

She Checked the Organ Donor Box at 16, Now She's Waiting for Someone Else's Lungs Canadian pulmonary hypertension patient, Kirsty McGeown signed up to be an organ donor as a teenager, believing it was a simple act of kindness. Years later, Kirsty found herself sitting on the opposite side of that decision. Now, she's focused on reclaiming life's normal moments, holding onto hope, and dreaming of one day becoming a grandmother. 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: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada

The Impact of Exercise and Fitness on Improving Patient Outcomes Pulmonary hypertension patients are often handed powerful medications, but rarely something just as transformative: movement. Dr. Lana Melendres-Groves reveals a shocking truth that fewer than half of PH patients are ever referred to pulmonary rehab, even though research proves it can dramatically improve strength, breathing, and quality of life. This missing prescription may be the one that gives patients their lives back. Participate in the PHenomenal Hope Run/Walk — New Mexico  Saturday, October 17th at 10 AM  Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @UNMHSC #phawareMD

A Mom of Three, a Hidden Killer, and the Specialist Who Saved Her Balancing life as a full-time teacher, wife, and mother of three, PAH patient, Wendy Mercado, put herself last until her body forced her to stop. After years of bouncing between doctors and medications, a PH specialist finally sat down, drew her heart on paper, and said the words Wendy needed to hear: We're in this together. That moment didn't just change her treatment plan, it changed her 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 Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.

23 Years of Survival and Still Fighting the Darkness No One Sees Surviving a rare disease isn't always heroic. Sometimes it's depression, isolation, and wondering if you're even "sick enough" to deserve the label anymore. Canadian pulmonary hypertension patient, Jenn Lalonde, battles imposter syndrome on her good days and crushing heaviness on the bad ones. Because even when your body stabilizes, your mind doesn't always follow. 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: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada

"Get Your Affairs in Order": She Told Her Doctor She'd Be Back in 20 Years In 1994, before there were any FDA approved treatments for pulmonary hypertension, Lynn Bouseman was told to prepare for the end. Her pressures were sky-high. Her heart was failing. A specialist calmly suggested she might only have months. Lynn looked him in the eye and said, "No," she had two small daughters waiting at home. Survival would require one thing above all else: a refusal to surrender. 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: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.

PH Didn't Just Change One Life, It Changed an Entire Family When pulmonary hypertension changed their father, Eric Borstein's life, sisters Abby and Ari refused to let the disease write the ending. Instead, their family turned heartbreak into hope by creating a community "Where is EB?" 5K dedicated to raising awareness, honoring their dad, and supporting others facing the same rare disease. What began as one family's response to unimaginable adversity has grown into something much bigger, a movement proving that every step taken can bring hope to someone still searching for answers. Learn more about the 3rd Annual Where is EB? 5K Walk and Fundraiser benefiting Team PHenomenal Hope September 20th @9am in Santa Monica, CA. 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: [email protected] @teamphhope  @where_is_eb @DJLisaFoxx

She Didn't Just Survive Being Rare. She Made Meaning Out of It. PH patient, Donna Wallace Harmon can't fly. She lives with limits. She knows tomorrow isn't guaranteed. But Donna refuses to live waiting for "someday." Her motto is simple and defiant: Do the best I can when I can, because nobody knows what tomorrow holds. 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: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada

Out of Breath, Not Out of Dreams: One Woman's PH Journey Across 79 Countries Carolyn Mathur was told she had only hours to live. Then days. Then months. Instead of waiting to die, she chose to live—loudly, joyfully, and without apology. Nearly three decades later, she's still here, traveling the world, and proving that hope can outlive even the bleakest diagnosis. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada

Pulmonary Hypertension Tried to Shrink Her World. She Made It Bigger. Being prescribed oxygen broke PAH patient, Sherri Odusanya, in a way her diagnosis hadn't. Sleeping beside a roaring machine. Dragging tanks through daily life. Crying in the car after picking up her daughter from school. Then came the real gut punch… doctors warning she might never fly again. For a woman who loved travel and had family across the ocean, it felt like her world was closing in. 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: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.

Misdiagnosed at 19, Married After Heart Failure and Living Moment to Moment Pulmonary hypertension patient, Kathy Ilano believed she'd never marry. Until she met her husband at her high school reunion. Still recovering from heart failure, carrying grief, fear, and a sodium-restricted diet, Kathy disclosed her illness on their very first date, convinced he wouldn't stay. He did. Their love story unfolds alongside IV pumps, emergency drives, and an unwavering partnership. 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: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada

She Was the Caregiver Until Pulmonary Hypertension Made Her the Patient For Christine Ryan, being ill wasn't the hardest part, letting others care for her was. Diagnosed with pulmonary hypertension after years of managing scleroderma, she struggled not with weakness, but with surrender. Used to pushing through pain for everyone else, Christine had to relearn how to listen to her body and accept limits without losing her sense of purpose. 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: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada

The Dream She Lost at 18 and the Child Who Gave It Back One of the first questions Amanda Chickie asked after her pulmonary hypertension diagnosis wasn't about life expectancy, it was about motherhood. The answer devastated her. Told that pregnancy was too dangerous, Amanda reflects on what it means to mourn children you'll never carry, how that grief shaped her mental health, and how hope slowly returned in a form she never expected. 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: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada

A New Mother's Greatest Fear: "Am I Going to See My Daughter Grow Up?" When Lisa Harder became a new mom, she never imagined that shortness of breath would lead to a rare, life-altering diagnosis. Lisa shares how uncertainty nearly stole her future and how breakthrough treatment, advocacy, and hope gave it back. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada

From Wedding Bells to a Life-Altering Diagnosis Cathleen Harrington was young, athletic, and newly engaged when pulmonary hypertension changed everything. Twenty-one years later, after surrogacy, clinical trials, a lung transplant, and battles with rejection she's still here, still fighting, and still building a life around gratitude, hope, and her children. 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: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.