Interview
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 www.cacna1a.org.
Credits
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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Transcript
To follow along with this interview, download the transcript below.
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We cannot do
this alone
Together we are changing the world—
one patient at a time
We hope that you join us on this journey to discover, develop and provide individualized antisense medicines for free for life for nano-rare patients. The ultimate personalized medicine approach – for free, for life.
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