• Home
  • Shows
  • Podcast
  • Education
    • Our Mission
    • Our Team & Board
    • Our History
    • Announcements
    • Pitch Us
    • FAQ
    • CONTACT US
  • Donate
  • Merch
Menu

The Story Collider

  • Home
  • Shows
  • Podcast
  • Education
  • About
    • Our Mission
    • Our Team & Board
    • Our History
    • Announcements
    • Pitch Us
    • FAQ
    • CONTACT US
  • Donate
  • Merch

"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.

Read More
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.

Read More
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.

Read More
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.

Read More
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.

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

"Mad Libs" by Barbara Goodman

January 21, 2025

When her stepdad is diagnosed with a rare blood cancer, Barbara Goodman realizes her life’s work might be exactly what he needs.

Read More

"Speeding Up the Diagnosis Process," by Zhandong Liu

January 21, 2025

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

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

"The Summer When Everything Changed," by Linda Martin

January 21, 2025

In the summer of 2016, Linda Martin received a call from her husband that changed her life forever.

Read More
Tags parenting a child with rare disease, pancreatitis, living with a rare disease, improving diagnosis

"The Gift," by Gareth Baynam

January 21, 2025

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

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

"Ben's Story," by Leah Myers

January 21, 2025

In the first few months of her baby’s life, Leah Myers worries that something is off.

Read More
Tags parenting a child with rare disease, living with a rare disease

"Figuring Out Who I Am," by Katie Stevens

January 21, 2025

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.

Read More
Tags parenting a child with rare disease, genetic testing, genetics, research network, 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.

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

"Manageable," by Amy Wood

January 21, 2025

Amy Wood struggles to cope with her son's sudden brain tumor diagnosis, and managing the lifelong effects of his benign craniopharyngioma.

Read More
Tags parenting a child with rare disease, building a rare disease foundation

"Not Strong At All," by Kim McClellan

January 21, 2025

Kim McClellan reflects on her lifelong battle with recurrent respiratory papillomatosis and learns how to use her voice to fight for change.

Read More
Tags living with a rare disease, drug repurposing, building a rare disease foundation, social media/disease awareness

"Piece By Piece," by Kit Donahue

January 21, 2025

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.

Read More
Tags patient-driven research, research network, research agenda/strategy, scientific conference

"Maybe This Is Progress," by Mary Vyas

January 21, 2025

After Mary Vyas’s son is diagnosed with PSC,, she is determined to be a living liver donor.

Read More
Tags parenting a child with rare disease, building a rare disease foundation, transplant

"For King Nazir," by Lakeia Nard

January 21, 2025

Lakeia Nard fights for answers to her son's rare disease.

Read More
Tags parenting a child with rare disease, building a rare disease foundation, improving diagnosis

"The Next Bomb To Drop," by Emily Ventura

January 21, 2025

Emily Ventura is desperate to find answers about her baby’s mysterious illness.

Read More
Tags parenting a child with rare disease, improving diagnosis, drug repurposing, transplant

"A Picture Frame," by Axel Lankenau

January 21, 2025

When Axel Lankenau is told that both of his sons have an ultra-rare, life-limiting neurological disorder, he is forced to confront a future he never imagined.

Read More
Tags parenting a child with rare disease, building a rare disease foundation, research network, patient-driven research

"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.

Read More
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
← Newer Posts Older Posts →

         SEE ALL STORIES

UPcoming Shows

Featured
Washington, DC - Positive Feedback
Jul 23
July 23, 2026
Washington, DC - Positive Feedback
July 23, 2026
July 23, 2026
New York, NY - Full Circle
Jul 27
July 27, 2026
New York, NY - Full Circle
July 27, 2026
July 27, 2026
Boise, ID - AWESOME
Aug 13
August 13, 2026
Boise, ID - AWESOME
August 13, 2026
August 13, 2026
Boise, ID - Revelation
Sep 8
September 8, 2026
Boise, ID - Revelation
September 8, 2026
September 8, 2026
San Antonio, TX - Science Stories Worth Repeating
Sep 8
September 8, 2026
San Antonio, TX - Science Stories Worth Repeating
September 8, 2026
September 8, 2026

Thank you to our listeners, storytellers, workshop participants, sponsors, donors, and funders. We couldn't do this without you! 

We are grateful for the support of the New York State Council on the Arts, The NYC Department of Cultural Affairs, Society for Science, and The Richard Lounsbery Foundation, as well as past support from the Rockefeller Brothers Fund, Science Sandbox, The National Association of Science Writers, The Kavli Foundation, Lyda Hill Philanthropies, The Burroughs Wellcome Fund, and The Tiffany & Co. Foundation, which seeks to preserve the world’s most treasured landscapes and seascapes.

Copyright © Story Collider Inc. All rights reserved.