These Kids Can't Wait
These Kids Can't Wait
Podcast Description
Welcome to These Kids Can't Wait. A podcast that brings you closer to researchers, doctors, and advocates working to drive progress and raise awareness for rare diseases.
Podcast Insights
Content Themes
The podcast covers themes such as the journey and challenges associated with rare diseases, the significance of early diagnosis and treatment, and the impact of patient advocacy, highlighted in episodes discussing personal experiences with Alpha-Mannosidosis and innovative treatments for Beta-Mannosidosis.
Welcome to These Kids Can’t Wait. A podcast that brings you closer to researchers, doctors, and advocates working to drive progress and raise awareness for rare diseases.
🎙️ Hosts: Erin Hubbard
🎤 Guest: Nikki Mcintosh
📅 Release Date: 11/17/2025
🔬 Topic: RARE MAMAS-Empowering Strategies for Navigating Your Child’s Rare Disease
Episode Overview
In this episode of These Kids Can’t Wait, host Erin Hubbard speaks with Nikki McIntosh, author of Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease and creator of the Rare MamasRising podcast. Nikki shares the mission behind her work. Providing resources, connection, and emotional support for parents raising medically complex or rare disease children. She reflects on the tools and mindsets she wished she had earlier in her journey and discusses how community, storytelling, and lived experience shaped her advocacy. Nikki also opens up about her life as a “rare mama” to her son with spinal muscular atrophy (SMA) and how that path inspired her to help others find clarity, connection, and strength.
Key Takeaways
✔️ The purpose behind the Rare Mamas Rising podcast and guidebook
✔️ How storytelling and shared experiences reduce isolation in the rare disease community
✔️ The evolving landscape of SMA care and treatment
✔️ The emotional and practical challenges of navigating complex care systems
✔️ Nikki’s mission to empower parents through education, mindset, and community
Resources & Links
https://www.instagram.com/rare_mamas/
🌐 Learn more: thelostenzymeproject.org
📢 Follow us on social media:
https://www.linkedin.com/company/the-lost-enzyme-project
https://www.instagram.com/thelostenzymeproject/
https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/
📖Books Mentioned in the Episode:
Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease.
📩 Contact us:
Email us at [email protected]
Producer: [email protected]
Subscribe & Stay Connected
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Disclaimer
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