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ABOUT
The Association for Origins of Angelman Syndrome was established in 2012 by parents who organize with the Ministry of Education, and a festival for advancement and donation.
About the Israeli Angelman Syndrome Foundation
The Israeli Angelman Syndrome Organization was established in 2012 with the aim of consolidating the efforts carried out in Israel to improve the lives of people with AS by promoting early diagnosis, research, treatment and training. The organization is designed to provide services to all Israeli children with AS and their families
EfratRabinovich
"We got the diagnosis with Angelman Syndrome when Romi was 2.5 years old.
Although very soon after the age of 6 months I realized Romi's development is slow, and we spent a lot of time taking her to various treatments, it was still very hard to get the diagnosis.
The hope that eventually everything will work out and we will spend our time launching retrospect, was proven false.
Upon receiving the diagnosis, we began searching the Internet for information and was appalled to see that there was no information in Hebrew, and the information in English was also poor. I did not find any association or any person I could contact. Our doctors did not recognize other patients with the same syndrome.
I felt alone. Very much alone.
At that moment I decided to set up an association. I wanted to be part of a group to share and learn. I did not want other parents to feel like me - alone.
In less than six months I met with Eitan and we started to establish the association. "
Efrat is an accountant. She is the director-general of the "Galop" Association, married to Tal, and mother of Romi, Noga and Hily.
Eitan & Tamar Shay
Eitan Shay: "Gil's diagnosis was a crisis point, we were constantly looking for information about the syndrome and we could not find anything.
We went to few doctors who knew only a little bit.
We felt that we were not progressing, and that we want to talk to people like us and could not find them.
We established the association together with Efrat to connect people like us, and to give our children the best treatment possible "
Eitan is an electronics engineer, working at Humaneyes.
Eitan is married to Tamar and they have six children. They live in Ma'ale Hachamisha
Tamar Shay, Lawyer: "Approximately at the age of 6 months, we noticed that something was wrong, something with the way she was looking at things... She was making eye contact with me and with the bed and the chair and she smiled to everyone at the same way, there was no significant difference between me and inanimate objects. At the beginning all we wanted was to cure her. Later on we realized we love her just as she is, but we want a better quality of life for her "
Tamar is Chairperson of "Ahadah" organization. She specializes in legal advocatory for helping people with disabilities get their rights and promotion of their quality of life.
She is providing counseling, support and guidance to the families of the organization and the clinic staff
The Angelman Syndrome multidisciplinary Clinic at the Sheba Medical Center, Tel Hashomer
The Angelman Syndrome multidisciplinary Clinic at the Sheba Medical Center, Tel Hashomer
The clinic was established in 2012 through cooperation between the Angelman Foundation and the Pediatric Neurology Institute at the Sheba Medical Center, Tel Hashomer, in order to provide a comprehensive treatment for the diverse and complex problems of children and adults with Angelman syndrome and their families.
The clinic is the only clinic in Israel specializing in treatment of Angelman syndrome.
The clinic is managed by Dr. Gali Havazelet Heimer, a senior pediatric neurologist.
The clinic is currently treating over 80 children and adults diagnosed with Angelman syndrome. In addition, services are provided for other syndromes that are very similar in their characteristics to Angelman syndrome.
The clinic is the second largest in Europe, and 3rd largest worldwide.
The clinic provides services for diagnosis, treatment and follow-up in the areas of neurology, orthopedics, adolescent medicine, nutrition, psychiatry, innovative treatments and research.
The Israeli Angelman Clinic is part of the International network of Angelman Clinics, managed by the American Angelman Syndrome Foundation (ASF)
To make an appointment, please contact Efrat Rabinovich:
052-7771786
horim.angelman@gmail.com
The clinic is well suited capable of treating patients who don't live in Israel via medical tourism
Foreign Relations
Foreign Relations
The foundation maintains close relations with many Angelman organizations, researchers, and doctors, as well as research and treatment centers worldwide.
The Israeli AS Foundation is among the Founding Fathers of ASA - Angelman Syndrome Alliance, which is gathering 20 countries as of today.
Research and clinical trials
Research and clinical trials
The Israeli Angelman Syndrome Foundation together with the AS Clinic at the sheba medical center are at the world class frontier of medical treatment technologies, research and clinical trials.
In 1997, Dr. Arthur L Beaudet discovered the mutation in the UBE3A gene that causes Angelman's syndrome, which focused on the classic case of the maternal gene, and soon developed laboratory mice and began a study to find out how the impairments cause decreased function.
XXXX has shown its name to restore the ability of the gene to improve the function of Bella Bella
In 2011, Dr. Ben Philpott showed that the paternal gene can be activated