"Still Fighting," by Angie Weaver
Angie Weaver holds onto an unshakable belief that her daughter, who has a rare SCN2A disorder, will beat the odds.
"Standing Together," by Carlos Guerrero Anderson
After multiple relapses, Carlos Guerrero-Anderson takes a chance on an experimental treatment for his rare cancer.
"The Dream Job," by Zollie Yavarow
One scientist's journey to finding her dream job began with the announcement of the first gene-edited humans.
"The Advocate I Never Planned to Become," by Necia Sabin
Necia shares her journey to finding her voice to help others.
"Finding Our Voice," by Amanda Gale
When her toddler is diagnosed with a rare genetic disorder that disrupts communication, Amanda Gale must learn how to interpret sound without language.
"A STAR Lights the Way," by Jessica Foglio
Jessica Foglio was a singer, deeply committed to her craft. Then everything changed when her son was born with a genetic disorder.
"The Simple, Powerful Act of Sharing Knowledge," by Ana Pataki
What began as her family’s journey through our younger son’s rare pediatric cancer diagnosis became Ana’s path into patient advocacy.
"Up at Night," by Jennifer Sills
After being told “good luck” was the only plan for her daughter’s rare disease, a mother finds a path forward for her family and others around the world.
"Flying Fish," by Andrew Longenecker
A fish, a bird, and a flying child reshaped everything Andrew Longenecker thought he knew about love, science, and resilience.
"This Tiny Voice Inside My Head," by Liat Vaknin-Nisan
Liat Vaknin-Nisan shares a defining moment from her daughter’s hospitalization, when fear, medical uncertainty, and maternal instinct collided—and her voice became essential.
"My Sister Callie," by Rocky Tucker
Rocky Tucker’s younger sister Callie is the 121st person to be diagnosed with Alstrom syndrome.
"Until We Weren't," by Cat Woolrich
Cat’s young son Callum has a seizure.
"We Can Still Go to Zambia, Right?" by Shayanne Martin
Shayanne Martin dreams of doing community health work in Zambia, but her daughter is born with a host of medical challenges.
"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.
"The Bridge That Built Me," by Ivana Badnjarevic
The Old Bridge in Heidelberg became the metaphoric turning point where a mother transformed from engineer to patient advocate.
"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.
"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.
"She Is Nesba," by Scotty Sims
When Scotty Sims' daughter is born something seems off to her, but everyone around her dismisses her concerns.
"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.
"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.
"Mad Libs" by Barbara Goodman
When her stepdad is diagnosed with a rare blood cancer, Barbara Goodman realizes her life’s work might be exactly what he needs.
"Speeding Up the Diagnosis Process," by Zhandong Liu
Scientist Zhandong Liu uses AI to speed up the diagnosis process.
"The Summer When Everything Changed," by Linda Martin
In the summer of 2016, Linda Martin received a call from her husband that changed her life forever.
"The Gift," by Gareth Baynam
Three Aboriginal children hold the key for unlocking important medical insights.
"Ben's Story," by Leah Myers
In the first few months of her baby’s life, Leah Myers worries that something is off.
"Figuring Out Who I Am," by Katie Stevens
Having become a mother at 18, this is supposed to be the year Katie Stevens figures out who she is — but then she discovers her 12-year-old son is terribly ill.
"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.
"Manageable," by Amy Wood
Amy Wood struggles to cope with her son's sudden brain tumor diagnosis, and managing the lifelong effects of his benign craniopharyngioma.
"Not Strong At All," by Kim McClellan
Kim McClellan reflects on her lifelong battle with recurrent respiratory papillomatosis and learns how to use her voice to fight for change.
"Piece By Piece," by Kit Donahue
After witnessing the disconnect between researchers and families struggling with mental illness, Kit Donohue is determined to bridge the gap between science and the people it aims to help.