Episode 11: RARE MAMAS-Empowering Strategies for Navigating Your Child’s Rare Disease
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Episode 11: RARE MAMAS-Empowering Strategies for Navigating Your Child’s Rare Disease
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Narrated by:
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About this listen
🎙️ 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 Mamas 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 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
Raremamas.com
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.
raremamas.com/book
📩 Contact us:
Email us at admin@thelostenzymeproject.org
Producer: alex@thelostenzymeproject.org
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