Vision, Mission & Values

At Cure SMA Foundation of India, everything from our funding priorities to our day-to-day decisions are driven by our vision, mission and values.

 

Our Vision

 

We dream of a SMA free world and a barrier free universal healthcare for all.

Our Mission

 

We are committed for bringing the treatment and cure for SMA to India and make healthcare accessible, inclusive and insured for all. We are committed to create awareness about SMA and the significance of genetic screening so that we accomplish a world without genetic diseases

Our Values

Innovation

 

Our commitment to a treatment and cure is not just about seeking solutions -it’s also about creating them.

Balance

 

As relentlessly we pursue a treatment and cure, we are also strategic. We know the fastest way to a future without SMA is to take a comprehensive, unbiased approach to research and maintain a balance of optimism and realism.

Collaboration

 

Our community is everything to us. We would not have made it this far in our fight  without the invaluable contributions of our researchers, doctors and families. Together we are and always will be stronger than SMA.

Respect

 

No one can conceive of a greater loss than the loss of one’s self-respect. At Cure SMA Foundation of India we firmly believe in the Right to live a dignified life by the individual patients and families. The society needs to accept and Respect the dignified way of life each SMA Individual chooses to live.

There is no right way to live with a disease like SMA. Every person’s experience is different, and it’s every family’s right to decide what SMA means to them.

Compassion

 

Thanks to Cure SMA Foundation of India, no person is ever alone in the battle against this gruesome disease. We offer unconditional support to people affected with SMA and communicate openly and honestly, giving them clear and accurate information.

Determination

 

Our work is not just restricted to a treatment and cure, but we also strive to achieve a genetic disease free world and we will remain strong in our fight no matter what challenges come our way.

 

 

Our Objectives

  • Spreading awareness about SMA, its diagnosis, genetic counselling, prenatal testing, management and treatment.
  • To get the approved treatment available and accessible.
  • To promote clinical trials of proposed drugs in India.
  • To create support/advisory group clinicians, therapists, orthotists, vendors of mobility and assistive devices in all parts of country to support SMA sufferers.
  • To establish SMA care centers in different parts of the country.
  • Supporting SMA sufferers (financially or non financially) for medical needs, educational needs, mobility and assistive needs.
  • Campaigning for accessibility and inclusivity in educational institutions and social life.
  • To promote and educate government over the necessity of medical insurance coverage for SMA and other genetic diseases.

 

Hope of Indian SMA Community

 

Cure SMA FOUNDATION OF INDIA is hope for SMA individuals and their family. Our Community is helping patients and families to get over the post-diagnosis emotional crisis and guiding them through the course of the disease. Our Community is constantly working for the availability and accessibility of the treatment which is our motivation to fight against this draconian disease.

Activities

  • Comprehensive health checkups for SMA sufferers.
  • Orthotics camps
  • Physiotherapy session arrangements for patients with poor socioeconomic background.
  • Liaisoning with government dept to make them aware of the urgent need of available treatment.
  • Awareness campaigns
  • Direct financial support for scoliosis surger
  • Representing our community and its needs to various relevant meets and conferences.