<![CDATA[The Rare Remix]]>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.

]]>www.therareremix.comRiverside.fm (https://riverside.com)Thu, 16 Jul 2026 23:32:07 GMTSun, 07 Jun 2026 12:50:11 GMT60Rare Remix Team<p>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.</p><p></p><p>Hosted by Bryan and Lindsey, The Rare Remix features real conversations with parents, caregivers, advocates, experts, and anyone on a remixed journey. </p><p></p><p>Together, we explore the everyday realities that families quietly learn to navigate, and discuss potential solutions based on first-hand experiences.</p><p></p><p>This may not be the life you imagined. It’s a remix.</p>episodicRare Remix Teamadmin@therareremix.comno<![CDATA[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.

]]>ef8f44a1-2442-4cd4-a669-6d1429440946Thu, 09 Jul 2026 08:00:00 GMT<p>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).</p><p>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.</p><p>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.</p><p>At its heart, this episode is about access, dignity, inclusion, and ensuring every person has the opportunity to be heard.</p>no00:52:0314Episode 04 - Communication & Education: a Conversation with Susan Norwell and Kourtney Barnumfull<![CDATA[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.

]]>3c315d0a-25df-4b85-898c-a068d1c6bfe1Sun, 21 Jun 2026 22:19:12 GMT<p>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.</p>no00:34:1613Episode 03 - Au-Kline Syndrome: a Conversation with Diannefull<![CDATA[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.

]]>b49b9d5d-4994-489b-9ef7-ef6b986b8f13Sun, 21 Jun 2026 22:16:27 GMT<p>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.</p>no00:39:5612Episode 02 - Rett Syndrome: a Conversation with Karenfull<![CDATA[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.

]]>2b15b22f-2055-42f9-b5ca-679e706e8304Fri, 19 Jun 2026 00:52:47 GMT<p>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.</p>no00:15:41Welcome to The Rare Remixtrailer