Our vision is for our community to be aware of SMA and supportive of those individuals and their families. We aim to be the first point of contact as well as the specialists on support for the SMA community.
Our mission is to proactively care, support, and provide for all SMA communities.
- Care: for those directly and indirectly affected by SMA, i.e. sufferers and their families and medical carers.
- Support: the mental, physical and emotional well-being of those affected by SMA.
- Provide: to assist in providing services to those affected by SMA.
- Spreading awareness about Spinal Muscular Atrophy (herein called SMA) amongst newly diagnosed children/persons and their families with regards to care and treatment of the diagnosed person, genetic counselling, and prenatal tests etc.
- To create a support group of competent doctors, physiotherapists, volunteers, agencies, vendors etc. in different places and cities for the support of the child/person with SMA and guidance of the families.
- Help and support (Financial and Non-Financial) for children/persons having SMA with regard to medical needs, education in school and college, inclusiveness and acceptance in day to day activities, acceptance by others in schools, education institutes and society, infrastructure in schools, colleges, public and private establishments for easy mobility of the people having SMA.
- Promoting and enhancing mobility of the SMA and other differently abled persons in railways, airways and other means of transport and also all other public and non-public establishments.
- To promote and educate the government over necessity of medical insurance cover for the SMA kids and other genetic conditions.
- To initiate and promote clinical trials of proposed drugs to cure SMA in India.
- To get approved drugs from outside India in India for treatment of SMA under medical supervision and to promote awareness of approved/under clinical trials treatments amongst medical fraternity.
- To make available and promote medical supplies and equipment at concessional rates required by SMA Kids at All India level and also import equipment and medical supplies for the SMA kids.
- Any other purpose which may help SMA and other differently abled kids and their families achieve overall social and economic development including sharing of information.
- To liaison with various departments of the government/NGO's/Institutes/Corporates/International Bodies in order to achieve the above objectives and aims.
- To perform any other act which may be conducive to the attainment of any of the objects of the Trust.