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  • Shows
  • Podcast
  • Education
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Featured
"Still Fighting," by Angie Weaver
parenting a child with rare disease, patient-driven research
"Still Fighting," by Angie Weaver
parenting a child with rare disease, patient-driven research

Angie Weaver holds onto an unshakable belief that her daughter, who has a rare SCN2A disorder, will beat the odds.

parenting a child with rare disease, patient-driven research
"Standing Together," by Carlos Guerrero Anderson
patient-driven research, improving diagnosis, community engagement
"Standing Together," by Carlos Guerrero Anderson
patient-driven research, improving diagnosis, community engagement

After multiple relapses, Carlos Guerrero-Anderson takes a chance on an experimental treatment for his rare cancer.

patient-driven research, improving diagnosis, community engagement
"The Dream Job," by Zollie Yavarow
patient-driven research, genetics
"The Dream Job," by Zollie Yavarow
patient-driven research, genetics

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

patient-driven research, genetics
"The Advocate I Never Planned to Become," by Necia Sabin
parenting a child with rare disease, building a rare disease foundation, advocate
"The Advocate I Never Planned to Become," by Necia Sabin
parenting a child with rare disease, building a rare disease foundation, advocate

Necia shares her journey to finding her voice to help others.

parenting a child with rare disease, building a rare disease foundation, advocate
"Finding Our Voice," by Amanda Gale
parenting a child with rare disease, genetic disease
"Finding Our Voice," by Amanda Gale
parenting a child with rare disease, genetic disease

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

parenting a child with rare disease, genetic disease
"A STAR Lights the Way," by Jessica Foglio
parenting a child with rare disease
"A STAR Lights the Way," by Jessica Foglio
parenting a child with rare disease

Jessica Foglio was a singer, deeply committed to her craft. Then everything changed when her son was born with a genetic disorder.

parenting a child with rare disease
"The Simple, Powerful Act of Sharing Knowledge," by Ana Pataki
parenting a child with rare disease, patient-driven research
"The Simple, Powerful Act of Sharing Knowledge," by Ana Pataki
parenting a child with rare disease, patient-driven research

What began as her family’s journey through our younger son’s rare pediatric cancer diagnosis became Ana’s path into patient advocacy.

parenting a child with rare disease, patient-driven research
"Up at Night," by Jennifer Sills
parenting a child with rare disease, building a rare disease foundation, community engagement, genetic disease
"Up at Night," by Jennifer Sills
parenting a child with rare disease, building a rare disease foundation, community engagement, genetic disease

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.

parenting a child with rare disease, building a rare disease foundation, community engagement, genetic disease
"Flying Fish," by Andrew Longenecker
"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
"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
parenting a child with rare disease, advocate
"My Sister Callie," by Rocky Tucker
parenting a child with rare disease, advocate

Rocky Tucker’s younger sister Callie is the 121st person to be diagnosed with Alstrom syndrome.

parenting a child with rare disease, advocate
"Until We Weren't," by Cat Woolrich
parenting a child with rare disease
"Until We Weren't," by Cat Woolrich
parenting a child with rare disease

Cat’s young son Callum has a seizure.

parenting a child with rare disease
"We Can Still Go To Zambia, Right?," by Shayanne Martin
parenting a child with rare disease, building a rare disease foundation, genetic disease, genetic testing, genetics
"We Can Still Go To Zambia, Right?," by Shayanne Martin
parenting a child with rare disease, building a rare disease foundation, genetic disease, genetic testing, genetics

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.

parenting a child with rare disease, building a rare disease foundation, genetic disease, genetic testing, genetics
"Hope for Our Entire Family," by Jenifer Merriam
parenting a child with rare disease, genetic disease, genetic testing, research network, patient-driven research
"Hope for Our Entire Family," by Jenifer Merriam
parenting a child with rare disease, genetic disease, genetic testing, research network, patient-driven research

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

parenting a child with rare disease, genetic disease, genetic testing, research network, patient-driven research
"The Bridge That Built Me," by Ivana Badnjarevic
parenting a child with rare disease, building a rare disease foundation, community engagement, advocate
"The Bridge That Built Me," by Ivana Badnjarevic
parenting a child with rare disease, building a rare disease foundation, community engagement, advocate

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.

parenting a child with rare disease, building a rare disease foundation, community engagement, advocate
"I hope my family will say it was worth it," by Michaelle Jinnette
parenting a child with rare disease, genetic disease, KCNH1, genetic testing, genetics
"I hope my family will say it was worth it," by Michaelle Jinnette
parenting a child with rare disease, genetic disease, KCNH1, genetic testing, genetics

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

parenting a child with rare disease, genetic disease, KCNH1, genetic testing, genetics
"Connection is the most powerful medicine," by Nancy Musarra
parenting a child with rare disease, genetics, genetic testing, epilepsy, KCNA2, genetic disease
"Connection is the most powerful medicine," by Nancy Musarra
parenting a child with rare disease, genetics, genetic testing, epilepsy, KCNA2, genetic disease

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.

parenting a child with rare disease, genetics, genetic testing, epilepsy, KCNA2, genetic disease
"From the NICU to the Podium," by Ada Lio
parenting a child with rare disease, found, genetic disease, community engagement, scientific conference
"From the NICU to the Podium," by Ada Lio
parenting a child with rare disease, found, genetic disease, community engagement, scientific conference

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.

parenting a child with rare disease, found, genetic disease, community engagement, scientific conference
"She Is Nesba," by Scotty Sims
parenting a child with rare disease, advocate, genetic disease, genetic testing
"She Is Nesba," by Scotty Sims
parenting a child with rare disease, advocate, genetic disease, genetic testing

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

parenting a child with rare disease, advocate, genetic disease, genetic testing
"When Will We Grow out of This?" by Sarah Chamberlin
parenting a child with rare disease, PKU, genetic disease
"When Will We Grow out of This?" by Sarah Chamberlin
parenting a child with rare disease, PKU, genetic disease

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.

parenting a child with rare disease, PKU, genetic disease
"Mad Libs" by Barbara Goodman
"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
genetics, genetic testing, improving diagnosis, genetic disease, research network, research agenda/strategy
"Speeding Up the Diagnosis Process," by Zhandong Liu
genetics, genetic testing, improving diagnosis, genetic disease, research network, research agenda/strategy

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

genetics, genetic testing, improving diagnosis, genetic disease, research network, research agenda/strategy
"The Summer When Everything Changed," by Linda Martin
parenting a child with rare disease, pancreatitis, living with a rare disease, improving diagnosis
"The Summer When Everything Changed," by Linda Martin
parenting a child with rare disease, pancreatitis, living with a rare disease, improving diagnosis

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

parenting a child with rare disease, pancreatitis, living with a rare disease, improving diagnosis
"The Gift," by Gareth Baynam
genetic disease, genetic testing, research agenda/strategy, drug repurposing, patient-driven research
"The Gift," by Gareth Baynam
genetic disease, genetic testing, research agenda/strategy, drug repurposing, patient-driven research

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

genetic disease, genetic testing, research agenda/strategy, drug repurposing, patient-driven research
"Ben's Story," by Leah Myers
parenting a child with rare disease, living with a rare disease
"Ben's Story," by Leah Myers
parenting a child with rare disease, living with a rare disease

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

parenting a child with rare disease, living with a rare disease
"Figuring Out Who I Am," by Katie Stevens
parenting a child with rare disease, genetic testing, genetics, research network, patient-driven research
"Figuring Out Who I Am," by Katie Stevens
parenting a child with rare disease, genetic testing, genetics, research network, patient-driven research

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.

parenting a child with rare disease, genetic testing, genetics, research network, patient-driven research
"The Family Curse," by Allison Peck
genetic disease, living with a rare disease, patient-driven research, genetic testing, genetics, building a rare disease foundation
"The Family Curse," by Allison Peck
genetic disease, living with a rare disease, patient-driven research, genetic testing, genetics, building a rare disease foundation

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

genetic disease, living with a rare disease, patient-driven research, genetic testing, genetics, building a rare disease foundation
"Manageable," by Amy Wood
parenting a child with rare disease, building a rare disease foundation
"Manageable," by Amy Wood
parenting a child with rare disease, building a rare disease foundation

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

parenting a child with rare disease, building a rare disease foundation
"Not Strong At All," by Kim McClellan
living with a rare disease, drug repurposing, building a rare disease foundation, social media/disease awareness
"Not Strong At All," by Kim McClellan
living with a rare disease, drug repurposing, building a rare disease foundation, social media/disease awareness

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

living with a rare disease, drug repurposing, building a rare disease foundation, social media/disease awareness
"Piece By Piece," by Kit Donahue
patient-driven research, research network, research agenda/strategy, scientific conference
"Piece By Piece," by Kit Donahue
patient-driven research, research network, research agenda/strategy, scientific conference

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.

patient-driven research, research network, research agenda/strategy, scientific conference

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.

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