Jen shares her journey with pulmonary arterial hypertension (PAH), a condition marked by high blood pressure in the lungs, which severely affects her daily life. She recounts her initial symptoms, eventual diagnosis, and the physical and mental challenges that followed. As a former hospice nurse and caregiver, Jen reflects on her transition to patient, detailing the emotional impact of her increasing dependence on others. She is now an advocate for those with PAH and rare diseases, working to raise awareness and connect people to clinical trials and support networks.

The song that Jen selected is The Climb by Miley Cyrus.

Kerri lives with Myasthenia Gravis (MG), a rare autoimmune condition that has turned her life upside down. Through profound reflections, she shares the multifaceted impact of MG on her life, touching on themes of resilience, loss, and gratitude. Kerri describes the strength required to live with an “invisible disability” and the journey to reframe her life around moments of beauty and simplicity. This discussion with Kerri feels like a journey in itself, filled with wisdom and warmth.

The song that Kerri chose is Both Sides Now by Joni Mitchell.

In this heartfelt episode, Daniel opens up about his journey with his son, Lucas, who was diagnosed with Menkes disease, a rare genetic disorder. Daniel shares the emotional challenges, personal growth, and love that shaped his family's experience. He discusses the need to adjust expectations as a parent, from the small things like waiting nine years for Lucas to grab his finger, to facing the reality that Lucas' life would be short. The podcast touches on the emotional rollercoaster of caring for a child with a life-limiting illness, but also celebrates the joy Lucas brought to their lives. Daniel’s reflections are filled with warmth, sorrow, and lessons learned from his son’s light.

The song that Daniel chose is Starlight by Muse.

Erin opens up about discovering Huntington's disease in her family when she was in her early 30s. She talks about her father and how his outbursts and behavioral changes, often misunderstood, were early signs of the disease. Erin reflects on her own diagnosis, the emotional burden of being gene-positive, and the delicate task of caregiving while also being a mother. We also talk about Erin’s passion for writing and storytelling, particularly her books, which focus on HD, rare diseases, and patient advocacy. She emphasizes the power of storytelling in the HD community, giving a voice to patients, caregivers, and families.

The song that Erin selected is Yer Fall by Hey Rosetta.

Sara had never heard of Neurofibromatosis (NF) before her son, August, was diagnosed with NF1. She has now become very knowledgeable about this condition, and she raises her voice to increase awareness of this rare disease. Sara shares how NF1 has rocked their world, between hospital appointments, hormonal treatments and trying to turn a rare disease into something to be proud of for August. With such a progressive disease, their journey is not over, but I am hopeful that patient advocates like Sara are paving the path to a treatment.

The song that Sara chose is Never give up by Sia.

Bianca is the mother of Lotta, who was born with Rett Syndrome. In this discussion, Bianca shares about her daughter's diagnosis, the lack of support when they received this life-changing information, and how they have adapted to it. We discuss the level of care Lotta requires and the impact on the family life. Bianca also shares the many emotions she has felt over the years, as she went through this journey with her daughter, and how caring for her has changed her.

The song Bianca chose is Easy Little Song by A.J. Jenkins.

Alex is Niko's dad, a 7-year old boy living with Cornelia de Lange Syndrome. In this first interview of a parent on the podcast, we talk about the worry as a parent when the fetus does not develop as expected. Alex shares about Niko's development after birth, the impact of the condition on Niko's body and the level of care they give him to make sure he grows as healthily as possible. We also discuss how Alex and his family communicate with Niko, considering he is non-verbal.

The song Alex selected is Nirvana's interpretation of Where did you sleep last night.