Sophie spent years fighting for a son no one could diagnose. Then a letter arrived with six letters and a number.
Read More"Now I Knew Where We Were Going," by Sophie Muir
Sophie spent years fighting for a son no one could diagnose. Then a letter arrived with six letters and a number.
Read More"The Problem Solver," by Seung Chun
When Seung Chun’s young son is diagnosed with a rare genetic mutation, she tries desperately to find a treatment.
Read More"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.
Read More"The Advocate I Never Planned to Become," by Necia Sabin
Necia shares her journey to finding her voice to help others.
Read More"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.
Read More"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.
Read More"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.
Read More"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.
Read More"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.
Read More"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.
Read More"My Sister Callie," by Rocky Tucker
Rocky Tucker’s younger sister Callie is the 121st person to be diagnosed with Alstrom syndrome.
Read More"Until We Weren't," by Cat Woolrich
Cat’s young son Callum has a seizure.
Read More"We Can Still Go To Zambia, Right?," by Shayanne Martin
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"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, building a supportive network for families affected by rare neurotransmitter diseases.
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