Episode 11: RARE MAMAS-Empowering Strategies for Navigating Your Child’s Rare Disease

Episode 13: Oliver’s Story

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] (https://tlep.org/ [https://tlep.org/]) Support the mission and follow along: 🔗 https://thelostenzymeproject.org/podcast/ [https://thelostenzymeproject.org/podcast/]

Episode 12: An Update from The Lost Enzyme Project

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] (https://tlep.org/ [https://tlep.org/]) Support the mission and follow along: 🔗 https://thelostenzymeproject.org/podcast/ [https://thelostenzymeproject.org/podcast/]

Episode 11: RARE MAMAS-Empowering Strategies for Navigating Your Child’s Rare Disease

🎙️ 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 [http://Raremamas.com] https://www.instagram.com/rare_mamas/ [https://www.instagram.com/rare_mamas/] 🌐 Learn more: thelostenzymeproject.org [http://thelostenzymeproject.org] 📢 Follow us on social media: https://www.linkedin.com/company/the-lost-enzyme-project [https://www.linkedin.com/company/the-lost-enzyme-project] https://www.instagram.com/thelostenzymeproject/ [https://www.instagram.com/thelostenzymeproject/] https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/ [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 [http://raremamas.com/book] 📩 Contact us: Email us at info@tlep.org [info@tlep.org] Producer: alex@tlep.org [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.

Episode 10: Finding Strength in Community

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/ [https://www.gauchercommunity.org/] 🌐 Learn more: thelostenzymeproject.org [http://thelostenzymeproject.org] 📢 Follow us on social media: https://www.linkedin.com/company/the-lost-enzyme-project [https://www.linkedin.com/company/the-lost-enzyme-project] https://www.instagram.com/thelostenzymeproject/ [https://www.instagram.com/thelostenzymeproject/] https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/ [https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/] 📩 Contact us: Email us at admin@thelostenzymeproject.org [admin@thelostenzymeproject.org] Producer: alex@thelostenzymeproject.org [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: A Boots on The Ground Approach

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 [http://thelostenzymeproject.org] 📢 Follow us on social media:https://www.linkedin.com/company/the-lost-enzyme-project [https://www.linkedin.com/company/the-lost-enzyme-projecthttps://www.instagram.com/thelostenzymeproject/https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/📩] https://www.instagram.com/thelostenzymeproject/ [https://www.linkedin.com/company/the-lost-enzyme-projecthttps://www.instagram.com/thelostenzymeproject/https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/📩] https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/ [https://www.linkedin.com/company/the-lost-enzyme-projecthttps://www.instagram.com/thelostenzymeproject/https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/📩] Kristin's Website: https://kristinandrus.com/ [https://kristinandrus.com/] Gathering for Impact: https://www.gatheringforimpact.org/ [https://www.gatheringforimpact.org/] Giving personality test: https://byu.az1.qualtrics.com/jfe/form/SV_1NTleJAzYPR868K [https://byu.az1.qualtrics.com/jfe/form/SV_1NTleJAzYPR868K] 📩 [https://www.linkedin.com/company/the-lost-enzyme-projecthttps://www.instagram.com/thelostenzymeproject/https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/📩] Contact us:Email us at admin@thelostenzymeproject.org [admin@thelostenzymeproject.org] Producer: alex@thelostenzymeproject.org [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.