First in a series. It’s October, which means it’s Rett Syndrome Awareness Month, which means it’s a good time to have an email chat with Barry Ross Rinehart. So I did, and he was gracious enough to tell me about the making of “Silent Angels,” a documentary…
Discussion
October is Rett Syndrome Awareness Month, and advocates are gathering for in-person events and making their voices heard online to raise awareness about Rett syndrome, a rare genetic condition that causes developmental abnormalities. As in years past, key goals of Rett Syndrome Awareness Month 2026 include fundraising to…
Discussion
Herewith another installment of the T-Shirt Chronicles, in which I relate episodes from our family’s life with Rett syndrome as represented by garments in our ridiculously outsized collection of T-shirts. Some of those T-shirts are mine. Some belong to my wife, Donna, or my daughter Abby, who has Rett…
Discussion
My late daughter, Cammy, was diagnosed with Rett syndrome in 2011. After a few months of being connected with the International Rett Syndrome Foundation, participating in the foundation’s Natural History Study, attending a conference, and meeting other families living with Rett, I became a point of contact for…
Rett syndrome is a rare genetic disorder that mostly affects females. The disease is characterized by normal early development, followed by slowed growth and a loss of motor control. Learn more about the disease here.
Most cases are caused by a mutation in the MECP2 gene. Scientists have identified mutations in CDKL5 and FOXG1 genes in those who have atypical or congenital Rett. Learn more about what causes the disease here.
Rett syndrome is associated with problems in cognitive, sensory, emotional, and motor skills, and across the nervous system that controls involuntary (or autonomic) functions. Learn more about the symptoms of the disease here.
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