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Back-to-School Resources for Rett Syndrome
For many families, the start of a new school year is filled with excitement. Fresh school supplies, new teachers, and the promise of new friendships make it a season of anticipation.
For families of children with Rett syndrome, however, back-to-school often brings a very different set of emotions and challenges.
We’re here to help.
Social Games & AAC for Eye Gaze Users
Social games can be a great way for an eye gaze user to engage with their peers. All it takes is a little creativity and the willingness to do things a little different.
Au-Kline Syndrome: A Conversation with Dianne
In Episode 3, Dianne shares how her daughter Dru’s ultra-rare Au-Kline syndrome diagnosis led their family to community, advocacy, early specialist care, and AAC, reminding us that rare families often learn, adapt, and advocate together.
Rett Syndrome: A Conversation with Karen
In Episode 2 of The Rare Remix Podcast, we were joined by Karen, a single parent of three: 15-year-old twins Christian and Caden, and 30-year-old Lynzie, who has Rett syndrome.
Rett syndrome is a rare neurodevelopmental disorder that can cause developmental regression, loss of spoken language, motor impairments, and reduced functional hand use. Abilities and support needs vary, but many people with Rett syndrome require significant assistance with everyday activities.
How We Optimize AI to Manage Our Rare Life Remix
From Medicaid maps to insurance appeals, appointment follow-up and planning for the future, we use AI to make complicated work more manageable—without handing over human decisions.
Have a Story to Share?
We’re always looking for parents, caregivers, advocates, medical professionals, and disability community leaders with honest stories and helpful insight to share.
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