Fragile X syndrome is a genetic condition which is caused by a change in a gene that is inherited at the time of conception. This gene, called the FMR1 gene is found on the X chromosome. When this gene change occurs the FMR1 gene does not work properly. The FMR1 gene is responsible for making a protein that is important in brain development. Therefore when the gene is not working properly brain function including learning, behavior and communication is affected.

Characteristics of fragile X syndrome can include:
  • attention problems
  • hand flapping
  • delayed development
  • long, narrow face
  • delayed speech
  • prominent ears & forehead
  • poor eye contact
  • large testicles

Note that physical features may not develop until puberty and that some individuals may not exhibit these characteristics.

The “buddeez” program- has been initiated to develop friendship with a difference. Children with special...
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It has been an honor and privilege to assist with the development of the Fragile X Society – India.
Fragile X respects no international boundaries and it is only by working together and sharing ideas and information that we can be sure that all families, no matter where they live, receive the best care and treatment based on the best scientific evidence.

Robert M. Miller
  Former Executive Director, NFXF, USA
The Fragile X Society of India headed by Shalini Kedia has been a great source of information for us when our child was diagnosed with Fragile X. Shalini has dedicated herself to the cause of helping many parents like us by giving us direction and guiding us through the procedures of testing and contacts to doctors and giving us assurance all the way through our tough times. She has been a go getter in bringing awareness among people and giving them hope and assistance in their times of need. We are highly indebted to her for all the help she has given and continues to give us. We are indeed lucky to have her and the Fragile X Society of India without whose help we would have been lost. Thanks for single handedly starting a venture which has gone a long way in reaching out to a lot of people in need of information, resources and just for being there.

Parents of a 11 year old with fragile x