『The Rare Remix』のカバーアート

The Rare Remix

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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.

2026 Rare Remix Team
人間関係 子育て 社会科学
エピソード
  • Episode 09 - Down Syndrome Is the Least Interesting Thing About Her: Staci & Nate's Story
    2026/09/16

    In Episode 09, The Rare Remix welcomes Staci and Nate for an honest conversation about raising their daughter Amelia, learning her Down syndrome diagnosis at birth, and discovering that a diagnosis can be life-changing while still being only a small part of who a person is.

    They share the emotional shift from fear and uncertainty to knowing Amelia as a spunky, opinionated, deeply empathetic child. They also discuss the realities behind a family life that may look easy from the outside: speech that is not always easy to understand, elopement and safety concerns, constant supervision, and the pressure of trying to understand a need that cannot always be expressed clearly.

    The conversation explores public reactions, sibling and family dynamics, marriage, and why children often approach disability with more natural curiosity and acceptance than adults. Staci and Nate also talk about navigating insurance, Medicaid, medical paperwork, and the life-changing value of finding GiGi's Playhouse, community resources, and other families who can offer both practical help and a fuller picture of the future.

    This episode reaches far beyond one diagnosis. It is for newly diagnosed families, parents, educators, and anyone who wants to move past assumptions, make inclusion more ordinary, and see the whole person.

    #TheRareRemix #DownSyndrome #DownSyndromeAwareness #DisabilityInclusion #DownSyndromeFamily

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    46 分
  • Episode 08 - What Physical Therapists Want Caregivers to Know
    2026/09/03

    Caregiving is physical work, but most families are never taught how to protect the body doing it. In Episode 08, The Rare Remix welcomes pediatric physical therapists Emily, Brittney, and Katelyn for a practical roundtable about making everyday care safer and more sustainable.

    They discuss lifting and transfer mechanics, why keeping the person close can reduce strain, and how allowing a child, teen, or adult to participate in movement can build strength while reducing the caregiver's workload. They also cover stretching, functional strength training, signs that it may be time to add adaptive equipment, and what might be important for a PT to know about emerging therapeutics and scientific advancements.

    The conversation reaches beyond body mechanics. The therapists explain why pediatric PT often means treating the whole family, how they approach rare or unfamiliar diagnoses, and why care should be based on the person in front of them rather than assumptions attached to a label.

    This episode is for parents, grandparents, siblings, educators, therapists, direct support professionals, and anyone supporting a child or loved one with complex medical needs. Protecting your body is not separate from caregiving. It is part of the care plan. #TheRareRemix #CaregiverSupport #PediatricPhysicalTherapy #DisabilityParenting #ComplexCaregiving

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    35 分
  • Episode 07 -Disability From A Kid’s Perspective
    2026/08/19

    In this mini-episode, Declan and Liam join The Rare Remix to talk about their cousin Ava, who has Rett syndrome and uses a Tobii eye-gaze device. They explain what they have learned about communicating with someone who does not rely on speech, why not speaking is not the same as not understanding, and how they use their 3D printer to make tools that help Ava participate.

    The boys also connect their own experience to a book read at school featuring a nonspeaking character whose intelligence is underestimated. From books and technology to adaptive activities and the everyday choice to invite someone to play, their perspective shows how naturally children can understand disability when they are given honest answers, useful context, and room to ask questions.

    Declan puts it simply: "Just because they're different doesn't mean they're different." This conversation is about Rett syndrome, but its message reaches much further: disability may change how someone communicates or participates without changing the need to connect, play, and belong.

    After listening, visit therareremix.com for our companion guide to disability-inclusive books, movies, and shows organized by age.

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    11 分
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