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Les Capacités Intellectuelles et les Dispositifs de CAA dans le Syndrome de Rett
Pendant des décennies, on a cru que les individus atteints du Syndrome de Rett souffraient d’un handicap intellectuel sévère. En fait, la plupart des travaux scientifiques définissent encore aujourd’hui le Syndrome de Rett comme l’une des principales causes de “retard mental” chez les filles. En tant que parent, je me souviens que c’était la première…
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Intellectual Abilities and AAC Devices in Rett Syndrome
For decades, it was believed that individuals who suffer from Rett Syndrome have severe intellectual disability. As a matter of fact, most scientific literature to this day defines Rett Syndrome as one of the leading causes of “mental retardation” in girls. As a parent, I remember that this was the first thing I researched when…
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Chapter 6: The Clinical Trial Journey Begins
The crisp Canadian air filled Andree’s lungs as she stepped off the plane in Toronto. Beside her, Adeline squirmed in her adapted stroller, her wide eyes taking in the unfamiliar surroundings. The whole preparation for the trip had been exhausting, but Andree felt a surge of excitement. This was it—the beginning of a new chapter,…
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Chapter 5: The Long Road to Clinical Trials
The path to enrolling their daughters in the gene therapy clinical trials was fraught with obstacles. Andree, Rana, and Maria faced a daunting array of paperwork, medical evaluations, and logistical challenges. Each step forward seemed to be met with a new hurdle. Andree’s husband, Luke, was supportive but cautious. He worried about the risks and…
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Chapter 4: Seeking New Horizons
The quest for better treatments and a potential cure for Rett syndrome became a consuming focus for all three mothers. They attended conferences, spoke with leading researchers, and kept abreast of the latest scientific developments. It was during one such conference that they first heard about the groundbreaking work being done in gene therapy. Dr.…
Cure Rett Canada 