The Rare Remix

Rare Remix Team
  • 5.0 (6)
  • Personal Journals

The Rare Remix is a podcast for families navigating rare disease, disability, caregiving, accessibility, developmental differences, and life after a diagnosis changes the rhythm of everything. Hosted by Bryan and Lindsey, The Rare Remix features real conversations with parents, caregivers, advocates, experts, and anyone on a remixed journey. Together, we explore the everyday realities that families quietly learn to navigate, and discuss potential solutions based on first-hand experiences. This may not be the life you imagined. It’s a remix.

Episodes

  1. 5d ago

    Episode 05 - Rett Syndrome, Mobility & Caregiving: a Conversation with Allison and Brendan

    In Episode 5, The Rare Remix welcomes Allison and Brendan, parents to Anya and Clare. Clare was diagnosed with Rett syndrome in 2020, just as the world shut down, leaving their family to navigate life-changing news while clinics, schools, therapies, and in-person support were suddenly out of reach. Allison and Brendan share the realities of raising a child who runs, jumps, climbs, and explores, and why mobility does not necessarily make caregiving easier. They discuss constant safety planning, elopement and water risks, adaptive equipment and support systems that can mistake walking for independence, sibling dynamics, puberty, travel, and the practical solutions families share with one another. Allison also offers a powerful distinction between being a mom and being a caregiver: the emotional relationship of being Clare's mother alongside the hands-on work required to keep her safe and supported. Together, she and Brendan explain how perspective, routine, flexibility, humor, community, and connection help their family make room for both. Along the way, they share how parent networks, local disability communities, and Clare sMILES for a Cure have helped turn isolation into connection and advocacy. This conversation is rooted in Rett syndrome, but its lessons reach any parent, grandparent, sibling, educator, therapist, or caregiver supporting someone with complex needs. Everyone has their own hard, and no family should have to carry it alone.

    Episode 05 - Rett Syndrome, Mobility & Caregiving: a Conversation with Allison and Brendan

  2. Jul 9

    Episode 04 - Communication & Education: a Conversation with Susan Norwell and Kourtney Barnum

    In Episode 4, we sit down with Susan Norwell and Kourtney Barnum from Rett University to explore the transformative world of Augmentative and Alternative Communication (AAC). As internationally recognized specialists in Rett syndrome, communication, and education for individuals with complex needs, Susan and Kourtney share their expertise on a wide range of topics, including AAC, eye gaze technology, low-tech and high-tech communication supports, literacy, classroom inclusion, and the importance of presuming competence. Together, we discuss what it truly means to give individuals the time, tools, and respect they need to communicate who they are at every age and every stage of life. Whether you're an educator, therapist, caregiver, sibling, or family member, this episode offers practical insights and encouragement for supporting meaningful communication. While our conversation is rooted in the Rett syndrome community, the principles extend far beyond—to autism, rare diseases, medical complexity, other disabilities, and even neurotypical children who benefit from additional communication support. At its heart, this episode is about access, dignity, inclusion, and ensuring every person has the opportunity to be heard.

    Episode 04 - Communication & Education: a Conversation with Susan Norwell and Kourtney Barnum

  3. Jun 21

    Episode 03 - Au-Kline Syndrome: a Conversation with Dianne

    Episode 3 features Dianne, mom to 8-year-old Dru, who lives with Au-Kline syndrome. We discuss the challenges of an ultra-rare diagnosis, navigating life with AAC, and the value of asking for help along the way.

    Episode 03 - Au-Kline Syndrome: a Conversation with Dianne

  4. Jun 21

    Episode 02 - Rett Syndrome: a Conversation with Karen

    Episode 2 features Karen, mom to 30-year-old Lynzie, who lives with Rett syndrome. We talk about the unique timing of Lynzie’s diagnosis, the challenges of making tough decisions in adulthood, and the importance of advocacy. Don’t miss this heartfelt conversation.

    Episode 02 - Rett Syndrome: a Conversation with Karen

  5. Trailer

    Welcome to The Rare Remix

    Bryan and Lindsey introduce The Rare Remix, share the story behind the podcast, and explain why they’re creating a space for real conversations, practical insight, and solutions for families navigating life with a new rhythm.

    Welcome to The Rare Remix

Trailer

Ratings & Reviews

5
out of 5
6 Ratings

About

The Rare Remix is a podcast for families navigating rare disease, disability, caregiving, accessibility, developmental differences, and life after a diagnosis changes the rhythm of everything. Hosted by Bryan and Lindsey, The Rare Remix features real conversations with parents, caregivers, advocates, experts, and anyone on a remixed journey. Together, we explore the everyday realities that families quietly learn to navigate, and discuss potential solutions based on first-hand experiences. This may not be the life you imagined. It’s a remix.

Information

  • Creator
    Rare Remix Team
  • Years Active
    2026
  • Episodes
    5
  • Rating
    Clean
  • Copyright
    © 2026 Rare Remix Team

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