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
 

Video: <a href='https://youtu.be/zRwy3xdTKvg'>Susannah's Story: Treated with an ASO</a>

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 Video: Susannah's Story: Treated with an ASO

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
 

Video: <a href="https://youtu.be/zRwy3xdTKvg" rel="noopener noreferrer">Susannah's Story: Treated with an ASO</a>

Sharing Hope Through Storytelling & Connection with Shanna Tolbert

Join the nano-rare disease community! Interviews features leading physicians, scientists, biotech experts, and patient advocates. Lessons teach core concepts about drugs. Our host Dr. Crooke has led the creation of antisense technology and his foundation, n-Lorem, is using this powerful technology to discover, develop, and provide personalized experimental antisense oligonucleotide medicines to nano-rare patients for free, for life. 

n-Lorem is a non-profit organization established to apply the efficiency, versatility and specificity of antisense technology to charitably provide experimental antisense oligonucleotide (ASO) medicines to treat patients (less than 30 patients) that are the result of a single genetic defect unique to only one or very few individuals. The advantage of experimental ASO medicines is that they can be developed rapidly, inexpensively and are highly specific. n-Lorem was founded by Dr. Stan Crooke, who founded IONIS Pharmaceuticals in 1989 and, through his vision and leadership, established the company as the leader in RNA-targeted therapeutics. 

The podcast is produced by n-Lorem Foundation and hosted by Dr. Stanley T. Crroke, who is the Founder, CEO and Chairman. Our videographer is Jon Magnuson. Our producers are Kira Dineen, Jon Magnuson, Kim Butler, and Amy Williford. To learn more about n-Lorem, visit nlorem.org. Contact us at podcast@nlorem.org.

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Join the nano-rare disease community! Interviews features leading physicians, scientists, biotech experts, and patient advocates. Lessons teach core concepts about drugs. Our host Dr. Crooke has led the creation of antisense technology and his foundation, n-Lorem, is using this powerful technology to discover, develop, and provide personalized experimental antisense oligonucleotide medicines to nano-rare patients for free, for life. n-Lorem is a non-profit organization established to apply the efficiency, versatility and specificity of antisense technology to charitably provide experimental antisense oligonucleotide (ASO) medicines to treat patients (less than 30 patients) that are the result of a single genetic defect unique to only one or very few individuals. The advantage of experimental ASO medicines is that they can be developed rapidly, inexpensively and are highly specific. n-Lorem was founded by Dr. Stan Crooke, who founded IONIS Pharmaceuticals in 1989 and, through his vision and leadership, established the company as the leader in RNA-targeted therapeutics. The podcast is produced by n-Lorem Foundation and hosted by Dr. Stanley T. Crroke, who is the Founder, CEO and Chairman. Our videographer is Jon Magnuson. Our producers are Kira Dineen, Jon Magnuson, Kim Butler, and Amy Williford. To learn more about n-Lorem, visit nlorem.org. Contact us at podcast@nlorem.org.

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Sharing Hope Through Storytelling & Connection with Shanna Tolbert

Sharing Hope Through Storytelling & Connection with Shanna Tolbert

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