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ABOUT THE RARE REMIX

Our Story.
Our Why.

We’re Lindsey and Bryan. We’re parents, advocates, and caregivers navigating rare disease life alongside our daughter, Ava. The Rare Remix is where we share what we’re learning, what we wish we’d known, and the stories, resources, and conversations helping us navigate the journey.

What Drives Us

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Rare Disease

Rett Syndrome changed our world. It’s where our story began and continues.

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Caregiving

The daily realities are complex, beautiful, and often invisible. We see you.

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Advocacy

We believe in speaking up for better systems, services and future possibilities.

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Resources

We share what we learn so that you can spend more time living.

OUR STORY

How The Rare Remix Came to Be

Quote with text 'The Rare Remix: Where we roll with it, and help other families do the same.'
Quote with text 'The Rare Remix: Where we roll with it, and help other families do the same.'

When we first started dreaming about this project, we considered calling it The Rett Remix. 

Ava’s Rett syndrome diagnosis is where our journey began, and that name felt personal and meaningful to our family.

But as the idea grew, so did our understanding of the community we had become a part of. We realized this project was not only for Rett syndrome families. It was for families navigating rare diagnoses, disability, medically complex life, caregiving, education systems, insurance, waivers, accessibility, advocacy, and all the rarely understood parts of life that come with loving and caring for someone with complex needs.

The name evolved from The Rett Remix to The Rare Remix.

For us, the term “Rare” has a dual meaning. It refers to rare diagnosis and rare disease, but also to the rare experiences, rare perspectives, rare challenges, and the rarely understood parts of special-needs, disability, caregiving, and medically complex family life.

“Remix” reflects the unexpected turn life takes after diagnosis—the fork in the road where life no longer follows the path you imagined. It also captures the daily adaptations families make: changing plans, finding workarounds, adjusting expectations, and putting a new spin on both everyday challenges and the larger journey.

At The Rare Remix, we try to be honest about the difficulty while also offering answers. The purpose of The Rare Remix is to take lived experience, complicated systems, advocacy struggles, caregiving realities, and hard-earned lessons, then turn them into practical insight and potential solutions for listeners navigating their own remix so that we can learn, adapt, and thrive together.

Three people, two adults and a child, standing inside a cafe or restaurant. The adults are smiling, and the child is wearing sunglasses and looking to the side. All three are dressed in pink clothing supporting a cause called Cure Rett.
A thank you message with cursive text that reads "Thank you for being a part of our Rare Remix - Lindsey & Bryan" and includes a red heart illustration.