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The Story Collider

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  • Shows
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"The Dream Job," by Zollie Yavarow

March 30, 2026

One scientist's journey to finding her dream job began with the announcement of the first gene-edited humans.

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Tags patient-driven research, genetics, genetic disease, genetic testing

"Finding Our Voice," by Amanda Gale

March 26, 2026

When her toddler is diagnosed with a rare genetic disorder that disrupts communication, Amanda Gale must learn how to interpret sound without language.

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Tags parenting a child with rare disease, genetic disease

"Up at Night," by Jennifer Sills

March 26, 2026

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.

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Tags parenting a child with rare disease, building a rare disease foundation, community engagement, genetic disease

"Flying Fish," by Andrew Longenecker

March 26, 2026

A fish, a bird, and a flying child reshaped everything Andrew Longenecker thought he knew about love, science, and resilience.

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Tags parenting a child with rare disease, genetic disease, patient-driven research

"We Can Still Go To Zambia, Right?," by Shayanne Martin

January 12, 2026

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.

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Tags parenting a child with rare disease, building a rare disease foundation, genetic disease, genetic testing, genetics

"Hope for Our Entire Family," by Jenifer Merriam

January 12, 2026

Jenifer Merriam's 14-year-old daughter started dropping her pencil and her hairbrush, and struggled with her studies. Something wasn’t right.

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Tags parenting a child with rare disease, genetic disease, genetic testing, research network, patient-driven research

"I hope my family will say it was worth it," by Michaelle Jinnette

January 12, 2026

All Michaelle Jinnette ever wanted was a big family—but when her fourth child arrives, her picture-perfect life is thrown unexpectedly off course.

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Tags parenting a child with rare disease, genetic disease, KCNH1, genetic testing, genetics

"Connection is the most powerful medicine," by Nancy Musarra

January 12, 2026

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.

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Tags parenting a child with rare disease, genetics, genetic testing, epilepsy, KCNA2, genetic disease

"From the NICU to the Podium," by Ada Lio

January 12, 2026

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.

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Tags parenting a child with rare disease, found, genetic disease, community engagement, scientific conference

"She Is Nesba," by Scotty Sims

January 12, 2026

When Scotty Sims' daughter is born something seems off to her, but everyone around her dismisses her concerns.

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Tags parenting a child with rare disease, advocate, genetic disease, genetic testing

"When Will We Grow out of This?" by Sarah Chamberlin

January 12, 2026

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.

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Tags parenting a child with rare disease, PKU, genetic disease

"Speeding Up the Diagnosis Process," by Zhandong Liu

January 21, 2025

Scientist Zhandong Liu uses AI to speed up the diagnosis process.

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Tags genetics, genetic testing, improving diagnosis, genetic disease, research network, research agenda/strategy

"The Gift," by Gareth Baynam

January 21, 2025

Three Aboriginal children hold the key for unlocking important medical insights.

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Tags genetic disease, genetic testing, research agenda/strategy, drug repurposing, patient-driven research

"The Family Curse," by Allison Peck

January 21, 2025

Allison Peck and her husband are faced with the harsh reality of the genetic disease IBMPFD when their three-year-old outruns him.

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Tags genetic disease, living with a rare disease, patient-driven research, genetic testing, genetics, building a rare disease foundation

"Never Giving Up, One More Time ," by Nikki Stusick

June 14, 2024

Science evolving is a good thing, but it’s not always the answer you hope for.

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Tags parenting a child with rare disease, genetic disease, improving diagnosis, genetics, genetic testing, patient-driven research, building a rare disease foundation, social media/disease awareness

"Thankful," by Riley Blevins

April 23, 2024

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.

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Tags parenting a child with rare disease, living with a rare disease, genetic disease, improving diagnosis, genetics, genetic testing

"Giving Up," by Heidi Wallis

April 23, 2024

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.

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Tags parenting a child with rare disease, genetic disease, improving diagnosis, genetics, genetic testing

"Reason to Hope," by Melissa Chaikof

April 22, 2024

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.

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Tags parenting a child with rare disease, genetic disease, improving diagnosis, animal models

"Driving Miss Dorie," by Dorie Shapiro

April 18, 2024

Prepare to be entertained by the thrilling saga of Dorie's fearless teenage driving escapades!

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Tags living with a rare disease, genetic disease

"Wrestling with an Estranged Father's Legacy," by Jeff Levenson

April 18, 2024

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.

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Tags genetics, genetic testing, genetic disease, patient-driven research, research agenda/strategy, improving diagnosis, building a rare disease foundation
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New York, NY - Realignment
May 17
May 17, 2026
New York, NY - Realignment
May 17, 2026
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London, UK - A Matter of Perspective
Jun 6
Jun 6, 2026
London, UK - A Matter of Perspective
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San Antonio, TX - Science Stories Worth Repeating
Jul 14
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San Antonio, TX - Science Stories Worth Repeating
Jul 14, 2026
Jul 14, 2026

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