Eu Digo X ("I say X") Program
The program was created to disseminate information about Fragile X Syndrome, expanding knowledge and sensitizing the population to the cause. We promote support and assistance in prevention, tracking, diagnosis, education and social inclusion with families registered in the
program, seeking partnerships with public and private society. At the moment, Eu Digo X Program has registered families from all regions of the country. In the moment, a large part of them still awaits results from the diagnostic examination of the Fragile X Syndrome.
The Fragile X Syndrome
The Fragile X Syndrome still is a little known genetic condition, though it is widespread, and affects intellectual development, behavior and causes speech delays.
Studies indicate that it is the most common hereditary cause of intellectual disability and that it can often be associated with autism.
It manifests itself in men as in women and can be present in several individuals within the same family.
Areas of Action
Diagnostics and Exams
We assist in obtaining the diagnosis, offering subsidies or fully funding examinations.
Research
We work together with several renowned entities about genetic research and improvements in current treatments.
Family Support
Family welcoming, providing guidance and assistance in prevention, screening, diagnosis, education and social inclusion, and offering a project for women care.
Social Awareness
Through campaigns and communication initiatives, we propagate knowledge and information about the Fragile X Syndrome.
Brazil’s Biggest Fragile X Syndrome Program
1067
Registrations
687
Registered Families
Fraxa Campaign
Buko Kaesemodel Institute represented Brazil in the global campaign “World Fragile X Day” for the 2nd consecutive year by lighting 14 buildings and sights across the country, adding to the 238 illuminated monuments in the planet, on July 22nd, World Fragile X Syndrome Day.
Together for the Rare
In the month in which the Parana Awareness Week on the Fragile X Syndrome, Buko Kaesemodel Institute and Athletico Paranaense Foundation (FUNCAP), came together for a month of alert regarding rare syndromes and diseases, providing a visit to CT do Caju for 12 participants of the PR Group for Rare Diseases and Syndromes and their guardians.
The Weel-being Project
The purpose of that project is to take care of caretakers, aiming at the physical and psychological well-being of pre-mutated mothers and women enrolled in the “Eu Digo X” program.
Autism Day
International Autism Awareness Day was the date chosen with the aim of bringing information to reduce discrimination and prejudice against individuals who have Autistic Spectrum Disorder (ASD). For this reason, the Buko Kaesemodel Institute, Jockey Plaza Shopping and the VONDER tool brand have come together for an innovative action.
