In this episode of These Kids Can’t Wait, we hear Oliver’s story through the perspective of his mom as she shares their family’s journey navigating life with rare disease. From the challenges and uncertainty to the moments of strength, resilience, and hope, this conversation offers an honest look into the realities rare disease families face every day. Every story shared helps raise awareness, build connection, and move us one step closer to a treatment.

🎧 Listen now

Learn more about The Lost Enzyme Project:

🔗 https://tlep.org (https://tlep.org/)

Support the mission and follow along:

🔗 https://thelostenzymeproject.org/podcast/

Episode 12: An Update from The Lost Enzyme Project

The founders of The Lost Enzyme Project share the journey to develop a treatment for Beta-Mannosidosis—how far we’ve come and how far we still have to go.

From early momentum to real progress, this episode offers a behind-the-scenes look at what it takes to move a rare disease treatment forward—the challenges, the milestones, and the urgency driving it all. Because for our kids, waiting isn’t an option.

🎧 Listen now

Learn more about The Lost Enzyme Project:

🔗 https://tlep.org (https://tlep.org/)

Support the mission and follow along:

🔗 https://thelostenzymeproject.org/podcast/

🎙️ 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 Rising 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

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 info@tlep.org

Producer: alex@tlep.org

Subscribe & Stay Connected

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