About Rett Syndrome
Rett syndrome is a non-hereditary neuro-developmental disorder that occurs mainly in girls (about one in 10,000 girls’ births). The syndrome is characterized by normal development in the early stages of life, followed by a variety of disorders: loss of speech, loss of hands use, walking disorders, irregular breathing, and indigestion. Despite the difficulties they face, girls with Rett syndrome have smart and expressive eyes. They make contact with their surroundings with their eyes. They are active, vital and full of joy of life, and for this reason they are fondly called around the world “Silent Angels”.
In 2001, the Israeli Rett Syndrome Foundation was established to coordinate efforts to promote treatment, knowledge, research and training, based on a professional perception that it is important to develop a service that will provide comprehensive attention to the needs of the girls, families and professionals in the medical, therapeutic and educational fields.
Along with the exciting achievements and progress in the field of research, the increase in public awareness, the increase in diagnoses in the population, the advancement of the rights of patients and their families, we face many challenges. Today we are more optimistic about the future of our daughters, sisters, granddaughters and friends with Rett Syndrome. The voices of all of us together are stronger than ever in the quest for a cure
Together we can change. We can beat the silence of the girls, their frustration, and the closed world that was forced on them. We can give these charming girls a future.
Research today – a cure tomorrow. The Rett Syndrome Foundation is working day and night to promote and fund research to find a cure for Rett Syndrome. Help us give our Silent Angels a future.
“I dream about the day she will call me dad”
Statement by the Chairman of the Foundation
Shmulik Zysman, founder and chairman
For the Silent Angels and for their families the hourglass does not stop for a moment! We must find a cure for the syndrome!
Rett syndrome is a genetic and not hereditary syndrome. It can hurt any family. The syndrome affects mostly girls in their first year of life, turning them from “normal” girls to 100 percent disabled. Despite the severe disability, the wonderful girls create a bond with their environment mainly with their eyes. They are active, vital and full of joy of life, and for this reason are affectionately called around the world “Silent Angels”.
Our support of the world’s leading scientists continues to bear fruit, leading to a number of discoveries that are the basis for innovative clinical trials involving girls around the world.
We believe that we can find a cure in our life time, even in our girl’s life time.
Alongside the great hope, we face a difficult and tortuous path. Support for clinical trials in the coming years requires a huge financial investment and the mobilization of all the resources of the foundation for the benefit of the researchers involved in the work.
With your support, we will continue to fund research and fulfill our hopes for finding a cure quickly!
Milestones in the progress of Research
Mutations in the MECP2 gene in the X chromosome are discovered to be the cause of Rett syndrome
Researchers are developing a model of Rett mice and research begins in mice
A breakthrough: Rett syndrome is reversible in mouse models!
Clinical studies on Rett girls are starting for the first time in the world
Genetic therapy in laboratory mice has cured the mice
Clinical trials are underway
A three-year plan to cure the syndrome began