Motherhood is a journey filled with challenges, but every step is worth it for the love and joy it brings. Zoe Hummel joins the show in this special Mother’s Day episode to discuss her son Mostyn’s emotional story to diagnosis, and the unique challenges and triumphs of being a nano-rare mom.
Order your <a href='https://www.nlorem.org/mothers-day-card-2024/'>Mother's Day card</a> by May 6, 2024! All proceed support nano-rare patients.
On This Episode We Discuss:
<ul><li>How Zoe met her Husband, Mostyn’s father</li>
<li>Zoe’s Violin origins and playing with Rod Stewart</li>
<li>Mostyn’s journey to a diagnosis</li>
<li>Zoe’s advice for parents observing abnormalities in their child's development</li>
<li>Mostyn’s severe epilepsy</li>
<li>A road trip to Boston Children’s Hospital in the middle of winter</li>
<li>The ‘unlucky’ diagnosis of KCNB1</li>
<li>For-profit companies promising false hope</li>
</ul>

Motherhood is a journey filled with challenges, but every step is worth it for the love and joy it brings. Zoe Hummel joins the show in this special Mother’s Day episode to discuss her son Mostyn’s emotional story to diagnosis, and the unique challenges and triumphs of being a nano-rare mom. Order your Mother's Day card by May 6, 2024! All proceed support nano-rare patients. On This Episode We Discuss: How Zoe met her Husband, Mostyn’s father Zoe’s Violin origins and playing with Rod Stewart Mostyn’s journey to a diagnosis Zoe’s advice for parents observing abnormalities in their child's development Mostyn’s severe epilepsy A road trip to Boston Children’s Hospital in the middle of winter The ‘unlucky’ diagnosis of KCNB1 For-profit companies promising false hope

Motherhood is a journey filled with challenges, but every step is worth it for the love and joy it brings. Zoe Hummel joins the show in this special Mother’s Day episode to discuss her son Mostyn’s emotional story to diagnosis, and the unique challenges and triumphs of being a nano-rare mom.
Order your <a href="https://www.nlorem.org/mothers-day-card-2024/" rel="noopener noreferrer">Mother's Day card</a> by May 6, 2024! All proceed support nano-rare patients.
On This Episode We Discuss:
<ul><li>How Zoe met her Husband, Mostyn’s father</li>
<li>Zoe’s Violin origins and playing with Rod Stewart</li>
<li>Mostyn’s journey to a diagnosis</li>
<li>Zoe’s advice for parents observing abnormalities in their child's development</li>
<li>Mostyn’s severe epilepsy</li>
<li>A road trip to Boston Children’s Hospital in the middle of winter</li>
<li>The ‘unlucky’ diagnosis of KCNB1</li>
<li>For-profit companies promising false hope</li>
</ul>

Mostyn’s Story: Mother’s Day Special with Zoe Hummel

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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Mostyn’s Story: Mother’s Day Special with Zoe Hummel

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