The first ever Indo – USA endeavor to create awareness for better Fragile X care in India by The Fragile X Society, India in association with UC DAVIS MIND Institute, USA was held in Kolkata recently. After its successful inauguration in Delhi, and creating awareness about the advancement in diagnosis, management and therapy in Bangalore and Kolkata, The Fragile X Society, India will conclude the medical symposium in Mumbai.
The Fragile X Syndrome is a rare condition, which is caused by a change in a gene that is inherited at the time of conception. When the gene called the FMR1, found in the X chromosome undergoes a change and does not function properly, it affects brain functions. It causes a wide range of cognitive impairment, from mild learning disabilities to severe intellectual disabilities (ID) that can impact individuals and families in various ways. Fragile X Syndrome is the most common known cause of autism or “autistic-like” behaviors.
The Indo- USA symposium provided a never before platform to expand and develop relationships between Indian and American researchers and clinicians. It was an avenue to exchange knowledge between Indian and American professionals about the latest evidence-based treatments for Fragile X-associated Disorders. Further it also engaged the patient community to expand the reach of the Fragile X Society India.
The symposium was attended by eminent doctors and healthcare experts like Dr. Gautam Ghosh, President, West Bengal Academy of Paediatrics; Dr. Jaydeep Choudhury, MBBS, DNB (PAED), MNAMS, FIAP, Institute of Child Health, Kolkata; Dr. Jai Ranjan Ram, Senior Consultant Psychiatrist, Apollo Gleneagles Hospital, Founder, Mental Health Foundation, Kolkata; Dr. Randi Hagerman, MD, Medical Director, UC Davis MIND Institute, USA; Mr. Robert Miller, International Patient Advocacy Organisational Consultant; Suma Shankar, MD, PhD, Precision Genomics Director, UC Davis, California, USA; Flora Tassone, PhD, Investigator, UC Davis MIND Institute, UC Davis, California, USA; Stephanie Sherman, PhD, Professor, Emory University, Atlanta, USA ; Dr. Kheya Ghosh Uttam, Secretary, West Bengal Academy of Pediatrics; Anne Skomorowsky MD, Asst. Professor, Columbia University Medical Center, New York, USA and Ms. Shalini Kedia, Founder Member and Chairperson, The Fragile X Society, India.
The Fragile X Society, India promotes public and professional awareness among the parents and eminent doctors all over India. It extends help to families with affected children in terms of literature, guidance and a deep understanding of how Fragile X can impact families. It holds seminars, workshops and conferences in Mumbai and various parts of the country.
The Fragile X Society, India has also partnered with UC DAVIS MIND Institute, USA through which the internationally acclaimed researchers and healthcare experts would create awareness and talk about the advances in diagnosis, management and therapy of Fragile X Syndrome and its associated disorders.
Having a child with special needs is challenging in itself and dealing with the social stigma and ignorance surrounding it makes it even more difficult. The root of stigma lies in the differences in perception leading to lack of awareness which does not allow early intervention in terms of appropriate diagnosis and treatment to take place in such cases.
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