PH Didn’t Just Change One Life, It Changed an Entire Family
I’m Aware That I’m Rare: the phaware® podcast
Episode 589 - Abby and Ari Borstein
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.
Who Cares for the Caregiver When Everyone Else Comes First?
I’m Aware That I’m Rare: the phaware® podcast
Episode 579 - Laura Camponeschi
Behind every pulmonary hypertension patient is someone quietly running on empty. Laura Camponeschi pulls back the curtain on caregiver burnout — the emotional, mental, and physical toll that builds when someone is “always on” and never feels safe stepping away.
He Sent 100 Emails to Save His Wife… Only 3 Doctors Answered
I’m Aware That I’m Rare: the phaware® podcast
Episode 571 - Florin Dumitrescu
From a devastating diagnosis to a lung transplant that changed everything, Florin Dumitrescu shares how mindset, persistence, and community carried his family through their darkest moment and how survival transformed into advocacy for pulmonary hypertension patients across Europe.
One Dad’s Mission to Cure His Son’s Genetic Disease
I’m Aware That I’m Rare: the phaware® podcast
Episode 558 - Anton Morkin
When Anton Morkin’s son was diagnosed with “idiopathic” pulmonary hypertension, he refused to accept “no known cause” as an answer. What followed was a crash course in genetics, the discovery of a rare mutation, and the formation of a worldwide coalition, TBX4Life.
How TBX4Life Is Fueling a Global Collaboration
I’m Aware That I’m Rare: the phaware® podcast
Episode 544 - LaRae Hacker
LaRae Hacker never set out to become a rare disease advocate — but when her daughter’s TBX4 diagnosis left her feeling helpless, she found power in connection. Discover how TBX4Life became her anchor in uncertainty and why she believes parent-led advocacy is the key to progress in rare disease research.
When Your Child Is Diagnosed With PAH: A Mother’s Journey Through the Unknown
I’m Aware That I’m Rare: the phaware® podcast
Episode 497 - Cynthia Neilson
Cynthia Neilson shares her journey as a mother raising her daughter Claire, who was diagnosed with pulmonary arterial hypertension (PAH) at a young age. Cynthia recounts the challenges she faced navigating the medical system, the emotional toll of dealing with an unexpected diagnosis, and the difficulties of balancing family life while ensuring her daughter received the best possible care. Cynthia emphasizes the value of connection, resilience, and advocacy for families dealing with rare diseases.
Rare Disease in Rural Minnesota: A Mother’s Journey Through PH & HHT
I’m Aware That I’m Rare: the phaware® podcast
Episode 491 - Sarah Stone
Sarah Stone shares the story of her family’s journey with rare medical conditions in North Central Minnesota. Sarah’s life took a turn when her daughter began showing unusual symptoms, eventually diagnosed with pulmonary hypertension, a rare condition complicated by her family’s genetic predisposition to HHT. As their medical challenges unfolded with two of her three children facing life-threatening conditions, Sarah discusses the trials of managing these complex issues while living in a remote area. She delves into the lessons learned, the importance of specialized medical care, and the determination to live life fully despite the circumstances.