Amrithavarshini FOR OSTEOGENSIS IMPERFECTA

The voice of OI, a rare disease affected people in India.

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HOW COULD YOU HELP ?

There are a whole range of ways you can get involved with Amrithavarshni. Whether you want to get involved personally by volunteering or fundraising for us, or by lending your financial support to our projects.

  • Forming an NGO charity society for the first time in India solely for the people affected with one of the rare genetic disorders named Osteogenesis Imperfecta.
  • Identifying affected people mainly from Kerala and neighboring states (as there is no disability census recorded in India for this disease) using ‘word of mouth’ strategy initially to disseminate information, awareness and preparing a database.
  • Successfully brought together such people under one institution called Amrithavarshini.
  • From the year of 2000, managed to provide a small financial support monthly to each individual from money donated by friends, family, and colleagues.(Rs 500/- for each individual)
  • Most of the members of this community are immobile and are confined to their homes. Amrithavarshini since 2010 organizes an annual get together called ‘Valtsalyavarsham’ for all its members from various parts of Kerala at a destination chosen by its committee .The society funds and organizes this activity. It was held in major
  • Trained our members and selected the five best members were selected and they in turn provide motivational lessons upon invitation by different scools and organizations.
  • Showcasing our member’s talents - using the local version of ‘Kaun Banega Crorepathi (KBC) locally known as ‘Ningalkkum Aakam Kodeeshwaran’. Made our two star members Ms.Athulya and Ms.vDhanya participate in this high profile reality show and won cash awards. They talked about this rare disease through this visual media platform thus reaching out to the general public.

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About Amrithavarshini

Amrithavarshini is a charitable society for a rare genetic disorder called OSTEOGENESIS IMPERFECTA (OI) commonly known as brittle bone disease. These patients have very fragile bones which can fracture at the slightest bump. We, at Amrithavarshini aim to better their lives and bring a smile on their face. We impact the lives of our children by making them self reliant by organizing and training them. At present we have over 60 gems under the care of Amrithavarshini, each unique and special in their own separate ways. Amrithavarshini is the sole charitable society working for the welfare of OI patients in kerala. At Amrithavarshini we believe that we can make a difference because It's after all one heart touching another one..
    Osteogenesis Imperfecta is a rare among the rare genetic disease. Its main symptom is breaking of the bones in the body without any reason or due to any external force. The weakness in the muscular system, bending of the spinal cord, loss of hearing capacity are the other symptoms seen in a patient affected with Osteogenesis Imperfecta. The cause of this disease is genetic mutations i.e. changes in the way the body is made. A child born with this disease will be bed-ridden and unable to move without the help of someone. People suffering from this disease deteriorate in health over time. To overcome the hardship suffered by these people, what is required is not sympathy or words of consolation; on the contrary it is the moral duty of all of us to create a self confidence in their mind and a feeling or an atmosphere that they are not isolated and there are people who are ready to help them.

Details of work undertaken by the Institution

Active role in spreading general awareness about Osteogenesis Imperfecta (OI) among the citizens
A holistic approach to disability that improves the lives of people with disability.
Working closely with their families/community to ensure they have the support they need.
Making OI community participate actively with the society as a part of their rehabilitation
Assisting each member to acquire basic education and further their studies as a part of inclusive education.

Outstanding achievements/ Contribution of the Institution

In the Past ten years in the area of welfare of persons with disabilities and rehabilitation/ education including technical education and vocational training to persons with disabilities.

A major challenge for many of those with OI, especially those who are adults, is to earn a living. Over the past several months, Amrithavarshini has trained many of its members in a range of vocational skills such as candle and jewellery making, manufacture of paper bags and umbrellas and so on. Products such as costume jewellery, scented candles and umbrellas made by our members are sold at trade fairs and exhibitions, thus generating some income. In fact, costume jewellery made by members of Amrithavarshini is sold under the ‘Celestial’ brand.
One of Amrithavarshini’s key objectives is to create more awareness about OI, both among the population at large and also in government. One major achievement in this area is that following our efforts, the Kerala Government has recognised the need to support people with OI.
attending regular schools.
20 of our members completed BPP course of IGNOU University.They wrote the exam with the help of scribe through our educational fund. One of our top achievers Ms Latheesa Ansari finished her master’s Degree in Commerce and is now preparing for her Civil Service exam.
A concern for many families with children with OI is what happens if a caregiver passes away or is incapacitated in any way. In order to address this concern, Amrithavarshini trained other family members/caregivers and provided suitable infrastructure, for people with OI.
Since mobility is a challenge for people with OI, many of them are unable to attend schools and are thus deprived of access to education. Hence, a top priority is to make it possible for our members to get access to education. By leveraging the power of technology and the Internet, we successfully implimented avenues to learning for Amrithavarshini’s members, and also for others with challenges that keep them from

Charity & love are the same

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Send your contribution by Cheq/DD/MO in favour of "Amrithavarshini Charitable Society"

  • Name : Amrithavarshini Charitable Society
  • Account Type: Current
  • Bank Account Number: 67145583320
  • Name of the Bank: State Bank of India
  • Branch Name/ Code: Kowdiar Branch, Trivandrum
  • RTGS (IFSC) Code: SBIN0070020

The amount donated towards Amrithavarshini Charitable Society attracts deduction under section 80G of the Income Tax Act.

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