Podcast
Welcome to Our Series
These Kids Can’t Wait: Discovering the World of Rare Disease” is a podcast that delves into the unique challenges and triumphs of children living with rare diseases. Each episode sheds light on the medical, emotional, and social aspects of these conditions, offering insights from healthcare professionals, researchers, philanthropists, and families directly impacted. Through heartfelt stories and expert discussions, the podcast aims to educate, inspire, and advocate for the rare disease community, highlighting the critical role of philanthropy in driving research and support.
To learn more about the podcast, email us at: podcast@tlep.org
Featured Episodes
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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 info@tlep.org
Producer: alex@tlep.org
Subscribe & Stay Connected
Stay informed by subscribing to These Kids Can’t Wait on Spotify, Apple Podcasts, Youtube or Amazon music. If you find this episode valuable, please leave a review to help raise awareness for rare disease research.
Meet the Team
Erin Hubbard
Host
Erin Hubbard is the host of These Kids Can’t Wait: Discovering the World of Rare Disease, a podcast that explores the challenges of living with and researching rare diseases, especially lysosomal storage disorders. As a co-founder of The Lost Enzyme Project, Erin is dedicated to connecting patients, families, and researchers to create a supportive community focused on advancing research and awareness. Through the podcast, Erin engages with doctors, scientists, philanthropists and other experts to share valuable insights and foster hope for those affected by rare diseases.
Lorena Lomelin
Co-Host
Laurel Gregier
Co-Host
Laurel lives in Montana with her husband and her 2 boys. Her eldest son, Oliver, was diagnosed with Beta-mannosidosis at the Mayo Clinic in Rochester, MN in 2014. He was the first patient diagnosed in the United States. This was the beginning of Laurel’s rare disease journey. In 2015, Laurel and Oliver moved to Minneapolis, MN, where Oliver underwent an experimental bone marrow transplant to help slow the progression of the disease. Since that time, Laurel has continued to advocate for Beta-mannosidosis awareness, inclusion, and advocacy. She was elected to the board of the International Society for Mannosidosis and Related Diseases (ISMRD) in 2022, helping connect rare patients and families around the world, and she arranged the inclusion of Beta-mannosidosis into the National Organization for Rare Disease (NORD) Rare Disease Database. In 2023, she co-founded The Lost Enzyme Project with those families diagnosed in the U.S. and is a co-host on the These Kids Can’t Wait podcast. She is a licensed mental health counselor and when not working, enjoys time spent with family and friends, flowers, travel, and music concerts.
Alex
Podcast Producer
Alex is a Film Production graduate from Loyola Marymount University with a passion for creating stories that inspire and entertain. Growing up in South Korea, China, and the U.S., he brings a unique global perspective to every project. Whether it’s through film, podcasts, or sound design, Alex loves crafting content that connects people and sparks meaningful conversations. When he’s not working, you can find him diving into the world of films, exploring new cuisines, or hiking.
