Rett Syndrome Awareness Program
Rett Syndrome is a neuro-genetic disorder caused due to Genetic Mutation, mainly affecting girls. Child would have normal growth and development upto age of around 18 months, subsequent to which they would start showing signs of regression or stagnation in the developmental milestones, slowly turning into specific developmental disabilities affecting the movement, speech, mental abilities, breathing disorders, gastro issues and a typical repetitive hand movements.
There are presently no known cure for the Syndrome.
We conduct regular programs with doctors and rehabilitation specialist for parents registered with our foundation to address specific issues parents have for their children with Rett Syndrome. Besides, these specific program we also do an Annual Awareness Program every year in October, which coincides with the Rett Awareness Month celebrated all over the world.
Last year we had done this awareness program at Lok Nayak Hospital, MAMC campus, New Delhi on 20th Oct, 2013.
We are looking for a venue, an auditorium for conducting this years program. The tentative date for the program is 12th October, 2014.
We seek your active cooperation to suggest suitable venue for this years program. Being a self funded organization, we would be great full if we are able to have this venue sponsored or subsidized for the charges involved.
Should you need any further information or details, we would be pleased to address the same on hearing from you.
We also invite you to visit our website www.rettsyndrome.in to get an insight of the activities under taken by our foundation and how you can contribute and support our cause.
With Best Wishes
Indian Rett Syndrome Foundation
Thanks very much for your response and support offered for the cause. We really appreciate your gesture and understanding of the matter.
I am pleased to inform that we had organized our 7th Rett Syndrome Awareness Program on 12th October, at Auditorium of GB Pant Hospital. Besides an array of doctors from GB Pant, Gangaram Hospital and AIIMS, we were privileged to have doctors from as far as Military Hospital Jabalpur to come specially for the program. We had Smt. Stuti Kackar, Secretary, Department of Disability, Ministry of Social Justice and Empowerment as our Chief Guest.
In our panel discussion with the specialist we covered, Genetics, Neurology, Orthopedics, Gastroenterology, Sleep Medicines besides offering a comprehensive interaction for the Rehabilitation Specialist from GB Pant and Institute of Physical Handicapped. The one to one meeting of the parents with the specialist was an absolute success with most parents taking full advantage of presence of specialist from various fields at the same place.
We had around 250 parents and care takers attend the program coming from all across the country. We even had participants from Nepal and Bangladesh joining for the program.
Besides discussion on medical issues of the children, we also made an effort to provide some entertainment in the form of a magic show and parents interaction. The program concluded with distribution of Duffel bags, diapers, quick dry sheets and toys for our little angels. We also reimbursed the to and fro fares for outstation parents and local conveyance for the parents coming from NCR region. Lunch, tea and snacks were also served at the program.
Needless to say, the entire program took a lot of our time and efforts to coordinate with the doctors, rehabilitation specialist and the parents. Substantial, expenses were also incurred to support the entire program and gifts provided to the participants.
We are very pleased to know of our willingness to extend support for the cause. However, it would be our pleasure to meet you personally to discuss the way forward. We are also very keen and interested to have some experienced person as part of our foundation to guide us to make our efforts more effective in the welfare of the children associated with our foundation.
Sir, our core executive group meets every second Saturday of the month at our small office that we have taken on rent at RK, Puram. This coming Saturday (8th Nov), being the second Saturday of the month we would be meeting and it would our delight if you could join us for this meeting.
I shall also speak to you to discuss on the other possibilities of our association.
Thanks and Kind Regards,
Indian Rett Syndrome Foundation