🎙️ 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

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.

Episode 10 – Finding Strength in Community

🎙️ Hosts: Erin Hubbard

🎤 Guest: Cyndi Frank

📅 Release Date: 10/07/2025

🔬 Topic: Resilience, Advocacy, and Rare Disease Awareness

🎧 Episode Overview

In this episode of These Kids Can’t Wait, host Erin Hubbard speaks with Cyndi Frank, a leading advocate in the Gaucher disease community. In recognition of Gaucher Disease Awareness Month, Cyndi shares her journey of raising awareness, connecting advocates, and building strong partnerships with pharmaceutical companies. Together, they discuss how collaboration, transparency, and communication between patients, advocates, and industry can drive meaningful progress in rare disease research and treatment.

Key Takeaways

✔️ The significance of Gaucher Disease Awareness Month

✔️ How advocates and industry can work together for better outcomes

✔️ The importance of trust and communication in rare disease partnerships

✔️ Challenges and opportunities in building sustainable collaboration

Resources & Links

Gaucher Community Alliance: https://www.gauchercommunity.org/

🌐 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/

📩 Contact us:

Email us at admin@thelostenzymeproject.org

Producer: alex@thelostenzymeproject.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.

In this episode, I accidentally mispronounced Gaucher disease as Gaucher's a few times near the beginning. My apologies for the mistake—thank you for understanding!

Episode 9: Turning Hope into Action

🎙️ Hosts: Erin Hubbard and Laurel Gregier

🎤 Guest: Kristin Andrus

📅 Release Date: 9/12/2025

🔬 Topic: Philanthropy, Family Values, and Building Stronger Communities

Episode Overview

In this episode of These Kids Can’t Wait, we sit down with Kristin Andrus—founder of Gathering for Impact, Sister Goods, and head of the Andrus Family Foundation. A passionate advocate for families, women, and vulnerable communities across Utah, Kristin shares her journey from growing up in a service-oriented home to creating platforms that mobilize thousands toward meaningful action.With honesty and warmth, she reflects on lessons learned from refugee mentorship, raising six children in a culture of giving, and why real impact often starts at the local level. Together, we explore how philanthropy, social media, and grassroots service intersect to create lasting change.

Key Takeaways

✔️ How family values and upbringing shape a life of service

✔️ The importance of “getting your hands dirty and your heart a little broken”

✔️ Building a culture of giving in your family and community

✔️ Practical advice for nonprofits with small but passionate bases of support

✔️ Why authentic connection matters more than numbers in fundraising and advocacy

Resources & Links🌐

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/

Kristin's Website: https://kristinandrus.com/

Gathering for Impact: https://www.gatheringforimpact.org/

Giving personality test: https://byu.az1.qualtrics.com/jfe/form/SV_1NTleJAzYPR868K

📩 Contact us:Email us at admin@thelostenzymeproject.org

Producer: alex@thelostenzymeproject.org

Subscribe & Stay ConnectedStay 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.