Shayanne Martin dreams of doing community health work in Zambia, but when her daughter is born with a host of medical challenges, she suddenly finds herself wondering whether the future she imagined is still within reach.
Read More"Hope for Our Entire Family," by Jenifer Merriam
Jenifer Merriam's 14-year-old daughter started dropping her pencil and her hairbrush, and struggled with her studies. Something wasn’t right.
Read More"I hope my family will say it was worth it," by Michaelle Jinnette
All Michaelle Jinnette ever wanted was a big family—but when her fourth child arrives, her picture-perfect life is thrown unexpectedly off course.
Read More"Connection is the most powerful medicine," by Nancy Musarra
When Nancy Musarra’s young son looks at his newborn sister and says, “This baby is broken,” she can no longer ignore the possibility that something is seriously wrong.
Read More"From the NICU to the Podium," by Ada Lio
When motherhood took an unexpected turn into the world of rare disease, Ada Lio transformed from a Type A planner into a community leader—building the very hope she once searched for.
Read More"She Is Nesba," by Scotty Sims
When Scotty Sims' daughter is born something seems off to her, but everyone around her dismisses her concerns.
Read More"When Will We Grow out of This?" by Sarah Chamberlin
Sarah Chamberlin is the mother of a child with a rare disease, and she finds herself torn between her instinct to focus on practical problem-solving and her daughter’s need to make sense of what her future might hold.
Read More"Speeding Up the Diagnosis Process," by Zhandong Liu
Scientist Zhandong Liu uses AI to speed up the diagnosis process.
Read More"The Gift," by Gareth Baynam
Three Aboriginal children hold the key for unlocking important medical insights.
Read More"The Family Curse," by Allison Peck
Allison Peck and her husband are faced with the harsh reality of the genetic disease IBMPFD when their three-year-old outruns him.
Read More"Never Giving Up, One More Time ," by Nikki Stusick
Science evolving is a good thing, but it’s not always the answer you hope for.
Read More"Thankful," by Riley Blevins
Riley Blevins went to work for Cure HHT in hopes of helping his son. But turns out, he wouldn't be the one doing the saving.
Read More"Giving Up," by Heidi Wallis
This is the story of a type-A rare disease mom who tries for years, but can't undo her daughter's brain damage, so she sets out to stop other children from facing the same fate, and learns in the interim that "giving up" is just what you need to do sometimes.
Read More"Reason to Hope," by Melissa Chaikof
When Melissa Chaikof receives first learns that her daughters are profoundly deaf and then, when they are older, that they are also going blind, she cannot sit back and wait for others to find a cure.
Read More"Driving Miss Dorie," by Dorie Shapiro
Prepare to be entertained by the thrilling saga of Dorie's fearless teenage driving escapades!
Read More"Wrestling with an Estranged Father's Legacy," by Jeff Levenson
In an unexpected twist of where he thought his life would take him, Jeff finds one of his greatest purposes in life raising awareness of and helping find therapies for rare diseases.
Read More"Heart vs. Brain," by Cassi Friday
A scientist used to compartmentalize as a way of emotional preservation but learned to harness the anxiety that comes with being a rare disease caregiver to help patients with her children's rare disease.
Read More"The Journey Is Just Beginning," by Carmen Camacho
Carmen Camacho's story spans decades, but her journey is just beginning.
Read More"How My Bad Dating History Led to Me Being a Rare Disease Advocate," by Becky Nieves
Do you know what happens when a Type A fixer turns into a rare disease mom warrior? Then have a listen!
Read More"Strong," by Amber Black
A mother's journey with self-identity while navigating her two-year-old son's rare genetic epilepsy.
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