AAS or Ataxia Awareness Society is an NGO for ataxia in India and it is completely dedicated to the ataxia sufferers in India. One of the Friedreich’s Ataxia sufferer, Ms. Swasti Wagh from Indore came up with the idea of forming an NGO that works for the welfare of Indian ataxians. It was in November 2017 that AAS was registered under MP society registration act 1973 section 44 with its head office in Indore. The NGO has now also received 80 G registration approval.
Dr. Pauranik, who is a renowned neurologist in Indore, suspected Ms. Swasti Wagh with ataxia and she was later diagnosed with Friedreich’s Ataxia (FA) by a DNA test in AIIMS Delhi. He was also the one who encouraged her to start AAS. What started with the courage and support of her family and friends, today is established as the only running NGO for ataxia in India. A team of neurologists, renowned physicians, ataxia researchers and many of the Indian ataxians and their families have joined the AAS squad since it was formed.
Many symptoms of the ataxias mimic a drunken person, which appears strange. And many people, especially in India, run to the Babas, Priests etc., in place of taking the sufferer to the hospital. This in turn is a waste of efforts, time and a lot of money.
Keeping this in mind, the main motive of this NGO is to spread awareness about ataxia throughout India so that the ataxians and their families don’t fall for any babas and waste their energy and money.
AAS works for the welfare of all ataxians and help to connect the ataxia patients to the neurologists and doctors who can guide them accurately. We conduct physiotherapy and speech therapy sessions re online via zoom to help the patients improve. AAS is very thankful to Mrs. Jui Dave (Professor and Head, Department of Neuro physiotherapy) and her team who has been effortlessly providing their constant help and guidance to the ataxia patients.
The NGO has collaborated with international NGO’s like GAI(Global Ataxia Initiative) and NAF (National Ataxia Foundation). We aim to find out common areas to work together and find out a solution to the problems faced by ataxians. We also have collaborated with IORD (Indian Organization of Rare Diseases) to get ataxia registered in the list of Rare Disease in India so that every patient in India can get the benefit of Rare Disease Policies in India.
Ambition of AAS
Spreading awareness about ataxia: the major goal of AAS is to spread awareness about ataxia among people of India.
Providing medical information: our next aim is to give the right and authentic medical information about ataxia to the ataxia sufferers and their families while also councelling them to cope up with the various issues they may face.
Giving information about Government help for ataxians in India: we further aim to provide information about financial, medical, educational grants and other benefits given by Government of India.
Preparing a database of all ataxia patients in India: the next goal of this NGO for ataxia in India is to collect the database of Indian ataxians which can help the Indian patients to participate in the clinical trials in future.
Supporting the ataxians in every way possible: AAS aims to conduct development and training projects, community Health Programs, family welfare Programs, Adult Literacy Programs, Functional Education Class and to provide homes for the aged, handicapped and retarded, mother and child health centers, Crèches etc., all of which supports the ataxians in India.