Sharing Hope Through Storytelling & Connection

with Shanna Tolbert

March 6, 2024


What’s one way to spread hope? By sharing your experiences and connecting with others who truly understand the everyday challenges nano-rare patients face. Shanna Tolbert was one of five nano-rare patient caregivers who participated in the panel, The Perilous Journey to Diagnosis and Treatment for Nano-rare Disease Patients. Listen to Shanna’s take on the importance of dialogue and relive a few patient stories as told by the parents who participated in this panel.

On This Episode We Discuss:

  • 0:56 The importance of hope
  • 3:38 Meeting other nano-rare caregivers and staying connected
  • 6:48 The Nano-rare Patient Colloquium is intimate
  • 12:41 Patients in attendance are one of the joys of the NRPC
  • 16:35 Patient Journey – Connor
  • 20:55 Patient Journey – Mostyn
  • 25:27 Patient Journey – Lena
  • 32:32 Patient Journey – Ireland
  • 39:29 Comments from patient father, Luke Rosen
  • 41:43 Susannah’s Story: Treated with and ASO

Watch on YouTube:

Shanna Tolbert is a former teacher and co-founder of the CACNA1A Foundation. She has always wanted to be a mother and dedicates her time to caring for her two precious daughters, Ireland and Brooke, with the help of her husband, Terry. Ireland has a CACNA1A variant that causes debilitating symptoms. If you want to learn more about CACNA1A, visit


Hosted by: Dr. Stan Crooke.
Videographer: Jon Magnuson of Mighty One Productions.
Producers: Colin Delaney, Kira Dineen, Jon Magnuson, Andrew Serrano and Amy Williford.

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Physicians and Institutions Transform the Lives of Nano-rare Patients

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