We are delighted to share another beautiful example of the importance and power of AAC. Ruth is a wonderful young lady from Belgium who enjoys her moments of communication so much! There is not a single doubt that being able to communicate provides a whole new quality of life and empowers our Rett people to […]
#EyeCanTalk – Johanna and Our Experience with Tobii
Continuing our Rett Syndrome and AAC Awareness Month campaign, we are honoured to share the experience of Johanna´s family and their journey with joys and challenges in their use of the Tobii device. Please join us in sharing photos, videos and stories of your daughter or son using any form of AAC. Email your photos, […]
#EyeCanTalk – Rett syndrome and AAC awareness month
It is not a coincidence that our last Family Focus story was dedicated to communication. If you haven´t got a chance to read this wonderful story yet … please do, it is very moving and takes us to our theme for Rett Syndrome Global Awareness Month. Once again, thanks to Usree and family for sharing […]
Call for GA Meeting and Expression of interest
As we gear up for the upcoming General Assembly Meeting, we invite passionate individuals who share our commitment to the Rett syndrome community to consider contributing to the organisation by joining the board. We seek members who are not only driven by a passion for Rett syndrome but also possess skills that can fuel our […]
Eye Got the Power: Milestones and Miracles in Our Rett Family’s Communication Journey
By Usree Bhattacharya It is poignant to me that the only video I have of my little girl, Kalika, speaking by mouth is the one in which she repeats after me: “I. Love. You.” When I captured that moment with my phone many years ago, I had no idea that it would be the last […]
Overview of the Network Support and Research event 2023
RSE board are very pleased to present an overview of the March 2023 Network Support and Research event (see the document below). We would particularly like to draw your attention to the outcomes and action plans for each country that participated. In addition, since the event, the presentations have been translated into Spanish, Italian, Finnish, […]
A football match to raise funds and promote awareness of Rett syndrome
Our new member from Spain – Mi Princesa Rett – are organising a football event with the “Legends of the Spanish national team” and the “Legends of the Badajoz football team” on the 30th of June 2023 at 21h. Mi Princesa Rett is a charity foundation based in Badajoz, Spain, dedicated to raising awareness and […]
Wearable devices to capture sleep problems
Today we would like to share an interesting article that discusses the challenges of studying sleep problems in autistic people. Historically, research participants have had to sleep in a lab while connected to cumbersome equipment such as polysomnography, which can be uncomfortable and interfere with sleep, particularly for someone with autism who may also have […]
The Burden of Illness Study in Rett Syndrome
Following our Network Support and Research Event we would like to share a video of Walter Kaufmann presentation “Burden of Illness in Rett Syndrome: Initial Evaluation of a Disorder-Specific Caregiver Survey”. In this talk, Walter Kaufmann will present an overview of the Burden of Illness in Rett Syndrome survey. Previous studies have shown that individuals […]
Update from Anavex Life Sciences clinical trial
Anavex Life Sciences Corp. announced the completion of the ANAVEX®2-73 (blarcamesine) U.S. Phase 2 study in Rett syndrome. The Company expects to announce topline results from this study in the next quarter. ANAVEX®2-73 is an orally available, small-molecule activator of the sigma-1 receptor which, data suggest, is pivotal to restoring neural cell homeostasis and promoting […]