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Cancel My Ticket to Heaven
Ever since Rett syndrome entered our lives, I have noticed something that I never saw before. I see disability everywhere now – in stories online, in support groups, in comments from strangers who think they are offering comfort. And one phrase keeps appearing over and over again: “It’s a blessing.”“Thank God” or “Jesus, Thank You”…
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Where Are We in 2026?
Two years without writing. Not by choice. Rather because the gap between what we hoped for and what actually happened became difficult to put into words. In 2024, when we launched Cure Rett Canada, there was real momentum around gene therapies. Clinical trials were opening, including internationally. It was reasonable to believe that this momentum…
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Où en sommes-nous en 2026?
Deux ans sans écrire. Pas par choix. Plutôt parce que le décalage entre ce qu’on espérait et ce qui s’est passé est devenu difficile à nommer. En 2024, quand on a lancé Cure Rett Canada, il y avait un élan réel autour des thérapies géniques. Des essais s’ouvraient, y compris à l’international. On pouvait raisonnablement…
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Encourager l’apprentissage de la propreté : petites victoires deviendront grandes
En tant que parent d’une enfant non verbale atteinte du syndrome de Rett, j’ai souvent fait face à des doutes et des résistances, même de la part de professionnels bien intentionnés. Cependant, après six mois d’efforts, je suis ravie de partager que ma fille a fait des progrès incroyables dans l’apprentissage de la propreté. Voici…
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Encouraging Potty Training: Small Victories Will Become Great
As a parent of a non-verbal child with Rett syndrome, I have often faced doubts and resistance, even from well-meaning professionals. However, after six months of effort, I am thrilled to share that my daughter has made incredible progress in potty training. Here’s how we succeeded, despite the challenges. An Adapted Method: The 3-Day Approach…
Cure Rett Canada 