Published on 04.11.2026
Together, Let’s Stop Rett Syndrome
Under the patronage of Sarah El Haïry, High Commissioner for Children, the campaign will launch in November 2026, following “Rett October,” the international awareness month for the disease. All donations collected will be donated to Institut Imagine, a European leader in research, care, and education on genetic diseases, to accelerate research on Rett syndrome.
Their names are Agathe, Anastasia, Élise, Laura, Leina, and Ysée.
They are between 4 and 13 years old and are the faces of this campaign.
Rett syndrome has robbed them of their speech, the use of their hands, and sometimes their ability to walk.
They depend on their loved ones for every daily task.
And yet, they understand everything.
A rare disease that can affect any family
Rett syndrome affects one in 10,000 female births. It is the leading cause of genetically-based multiple disabilities among girls in France. Caused by a mutation in the MECP2 gene, carried on the X chromosome, it occurs spontaneously in the vast majority of cases, with no family history.
After the first few months of seemingly normal development, regression occurs between 6 and 18 months of age. This is often accompanied by epilepsy, respiratory problems, feeding difficulties, and scoliosis. But behind these bodies that they cannot control as they would like, these little girls remain fully conscious: they see, hear, understand, and feel everything. When given the means to do so, some are able to express themselves using alternative communication tools, such as eye-tracking computers.
Decisive Advances, Research That Needs to Accelerate
Rett syndrome does not destroy neurons; rather, it disrupts their functioning. Research has demonstrated that the disease is reversible in animals. Since then, progress has accelerated: the first treatment for symptoms was approved in Europe in 2026, targeted therapies are under development, and the first gene therapy trials are underway in the United States. The Imagine Institute is working to advance these avenues of research and make them accessible to French patients. Slowing the progression of the disease, enabling these children to regain their independence, and ultimately finding a cure: this hope has never been more tangible.
“When I grow up, I could have been…”
Six portraits of young girls with Rett syndrome, and their childhood dreams that are gradually fading away due to a disease that traps them inside their own bodies. Through their intense gaze, they invite the audience to look beyond the surface. Behind bodies that no longer obey them, they understand, feel, and dream just like other children. The campaign plays on the contrast between their gaze and their words—between what we think we see and what they are actually experiencing.
On each visual, a QR code leads to the “Their Faces, Their Stories” page, and then to a donation page.
The campaign will roll out across France starting in early November, featuring urban and digital billboards, video, social media, print media, and radio, all under the common slogan: “Together, let’s stop Rett syndrome.”
With this campaign, we want to bring a little-known disease out of the shadows and change the way people see it: behind this multiple disability, intelligence, sensitivity, and willpower remain intact. Our daughters are waiting for a treatment, and every day counts for research. The disease has taken away their voices, their movements, and their dreams. All they have left is their gaze. This fall, it will be everywhere.
These little girls can’t speak, but they understand everything—including the way people look at them. Let’s change that. And let’s give researchers the resources they need to help these girls regain their dreams. I’m proud to be the spokesperson for this campaign and to speak on their behalf until they can speak for themselves again.
For children with Rett syndrome and their families, every breakthrough in research brings very real hope: a better understanding of the disease, improvements in daily life, and the development of new treatment options. Professor Nadia Bahi-Buisson and all the teams at the Imagine Institute working on neurodevelopmental disorders and cognitive impairments are fully committed to advancing knowledge and accelerating the development of solutions tailored to patients’ needs. This campaign is essential: it helps raise awareness of Rett syndrome and provides the resources needed for research to move forward, alongside families.
Press Contacts:
- Institut Imagine
Corinne de Conti, Directrice de la communication et des affaires publiques
corinne.deconti@institutimagine.org – 06 72 38 76 42 - Havas
Béryl de Fayet, Directrice de la communication et du marketing d’Havas Paris
beryl.de-fayet@havas.com – 06 29 91 29 91