Thursday, August 25, 2011

A ray of hope for Indian Rett Angels and their families

Renowned neuro-scientist, Dr Mriganka Sur is all set to collaborate with the All India Institute of Medical Sciences (AIIMS), New Delhi for a research on finding a cure for neuro development diseases like Autism, Rett syndrome, etc.

Speaking to the Chandigarh Newsline, Dr Sur, professor of Neurosciences and head, department of Brain and Cognitive Sciences, Massachusetts Institute of Technology (MIT), USA, said, “We are planning to collaborate on a research programme on neuro development disorders. Despite the rarity of the disease, Rett syndrome which is found 95 per cent in girls due to their mutations, in India, the percentage of girls suffering from it is quite high. Even in USA, one in every 150 children is prone to Autism and in the United Kingdom, the chances of having autism are even higher, one in every 100. Though there are clinical trials and constant researches going on, there is no cure yet for most neuro development disorders.”

Dr Sur, who is the director of Simon’s Initiative on Autism, said, “Though some studies have established that Autism is mostly a genetic disease, yet gene therapy is no cure for this genetic disorder.”

Though there are no pre natal tests available to detect if the child could be born with autism, however, Dr Sur warns that autism in family history may be a sign. “If anyone in the family has a history of autism, chances are that the baby could be born with the disorder too. But instead of losing hope, would be parents should approach genetic counsellors or informed physicians.”

The available therapies for autism include applied behaviour analysis (ABA), developmental models, structured teaching, speech and language therapy, social skills therapy, and occupational therapy, he added.

The diseases

Autism spectrum disorder (ASD) is a range of complex neuro development disorders, characterised by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behaviour. Usually, the symptoms start showing before the child is three years old.

Rett syndrome is a childhood neuro developmental disorder that affects females almost exclusively. The child generally appears to grow and develop normally, before symptoms begin. Early symptoms may include loss of muscle tone, a slowing of development, problems crawling or walking, and diminished eye contact. As the syndrome progresses, a child will lose purposeful use of hands and the ability to speak. The inability to perform motor functions is perhaps the most severely disabling feature of Rett syndrome, interfering with body movement.

Source: Indian

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Thursday, August 4, 2011

Fourth Annual Rett syndrome Meeting and Symposium: 23rd October 2011

Dear All,

As October is "Rett syndrome Awareness Month", So Indian Rett Syndrome Foundation is going to organize the Fourth Annual Rett Syndrome Awareness Meet/Symposium with help of Department of Pediatrics, AIIMS, New Delhi.

This meeting will be joined by Parents from different parts of India and Healthcare professionals (Doctors, Therapists, Scientists and Researchers). This one day Meeting/symposium will include lectures on the basics of Rett syndrome and its management, Parent-Doctor interactive sessions and therapy sessions.

Come and Join us to educate yourself and raise awareness about Rett Syndrome, a neurodevelopmental disorder. which primarily affects girls known as "Silent Angels".

We are also looking forward for sponsorships for this event and donations for this cause. Your help and support can improve lives of these little Angels and their families.

Date of Event: 23rd October, 2011
Day: Sunday
Time: 9.30am
Venue: Conference Hall, First Floor, JLN Auditorium,
All India Institute of Medical Sciences
Ansari Nagar
New Delhi-110029

Please save the date in your calenders and let your family/friends know about this by spreading the word.

If you have any queries in regard of this event, please contact us at,

Registration to this event is totally free but limited. For registration for this event, please contact


Indian Rett Syndrome Foundation
12/1, sector –1, Pushp Vihar,
New Delhii -110017
Ph# +919999343421