• Home
  • Shows
  • Podcast
  • Education
    • Our Mission
    • Our Team & Board
    • Our History
    • Announcements
    • Submissions
    • FAQ
    • Store
    • CONTACT US
  • Donate
Menu

The Story Collider

  • Home
  • Shows
  • Podcast
  • Education
  • About
    • Our Mission
    • Our Team & Board
    • Our History
    • Announcements
    • Submissions
    • FAQ
    • Store
    • CONTACT US
  • Donate

"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

"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

"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

"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

"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.

Read More
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.

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

"Rare Resilience," by Ann Geffen

April 23, 2024

A mother recounts her journey as her 3-year-old daughter battles Kawasaki disease, a rare and potentially life-threatening condition.

Read More
Tags parenting a child with rare disease

"Searching for Answers," by Zoe Wisnoski

April 23, 2024

Zoe Wisnoski's son has a high fever so she searches for answers that are not always so easily given.

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

"Answering the Shrug," by Yssa DeWoody

April 22, 2024

When a doctor offers only a shrug in response to her daughter’s exam, Yssa DeWoody sets off on her path to becoming an advocate.

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

"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.

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

"The Power of Finding Your Community," by Tracy Milne

April 22, 2024

When Tracy Milne's young son is diagnosed with a rare disease, she finds hope in community.

Read More
Tags parenting a child with rare disease, community engagement

"The Day My World Changed," by Maddison Hall

April 22, 2024

After dreams of a perfect parenthood, Maddison was thrown into the rare disease world and became an unexpected advocate for her daughter and others in the Glut1 Deficiency Community.

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

"Can We Fix It?" by Kasha Morris

April 18, 2024

This is a story about fixing an impossible problem in an unexpected way.

Read More
Tags parenting a child with rare disease, community engagement, drug repurposing, social media/disease awareness

"What's Wrong With My Baby?" by Julie Raskin

April 18, 2024

Julie Raskin recalls her son's birth and strange variation of nursing and sleep of the first two days of his life.

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

"That 'Spinning Room' Moment," by Jill Kiernan

April 18, 2024

This is a story about one family's rare disease journey and the birth of a community.

Read More
Tags community engagement, parenting a child with rare disease, building a rare disease foundation, improving diagnosis, patient-driven research, social media/disease awareness
Older Posts →

         SEE ALL STORIES

UPcoming Shows

Featured
New York, NY - Self Discovery
Jul 14
Jul 14, 2025
New York, NY - Self Discovery
Jul 14, 2025
Jul 14, 2025
Los Angeles, CA - Don't Panic
Jul 17
Jul 17, 2025
Los Angeles, CA - Don't Panic
Jul 17, 2025
Jul 17, 2025

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 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.