Three decades after Fragile X was discovered as the single gene linked to autism, India is set to join the global awareness initiative in a big way for the first time by illuminating prominent buildings in teal green on July 22, observed as World Fragile X Day.
So far 23 malls, hotels, clubs, high rise apartments have confirmed their participation. These include the Fortune Pandiyan Hotel, Madurai and Daiwik hotel, Rameswaram, in Tamil Nadu, two city centres in Salt Lake and New Town in Kolkata, the Woodrose Club, Augusta Club and MLR convention centre in Bengaluru, One Mall in Ahmedabad, Planet Godrej residential towers in Mumbai, Mayo College, Ajmer and six properties of the Taj group of hotels in Pune, Delhi, Mumbai, Jaipur and Gurugram, among others.
The domestic Fragile X support groups and families view this as a big leap in their efforts meant to throw light on the lesser known genetic condition that passes down silently through generations.
In 1991, the Fragile X was identified by three American researchers as the most common inherited single gene cause of autism.
In India, 400,000 individuals are said to be affected with Fragile X Syndrome (FXS), according to Shalini Kedia, the founder-chairperson of Fragile X Society-India, established in 2003, as a support system for families impacted with the condition.
Research studies by the Centers for Disease Control & Prevention, and the National Fragile X Foundation in California (which is the world’s first such organisation) estimate that one in 3,000 male babies and one in 8,000 girl babies are affected with FXS while four per cent of all children with diagnosis of Autism have FXS as the underlying cause of their condition.
“Counselling and awareness about FXS can empower the family with reproductive options and make a difference in their life and the future of the child,” said Debashis Ghosal, a parent advocate from Kolkata.
Fragile X events seek to raise awareness among all sections of public and professionals. For the first time, 30 children diagnosed with FXS will be participating in a mini-marathon on Thursday morning in Mumbai. The FXS-I has released 60 video clips this year with film stars, sportspersons, insta influencers and bloggers who talk about FXS and the way forward.
The global illumination campaign was launched in 2018 with the lighting up of the Niagra Falls. In 2019, the Taj Mahal Tower, Mumbai, joined the cause. This year more than 250 lightings are scheduled globally. By tomorrow evening, Ms.Kedia expects more buildings across the country to get on the campaign. “A family just called to say they would illuminate their two small restaurants on the Delhi-Jaipur highway. Such gestures strengthen our movement,” she said.