About us
Welcome to the CureSMA India Network
Cure SMA Foundation of India is a registered public charitable trust with pan India representation. Since the humble beginning of 10 families, we have grown to represent SMA families and individuals across the country. Each year we support SMA families through our newly diagnosed care and counselling, resource pool, SMA camps and supportive services, patient advocacy and many other direct family support services. We are extensively working to empower SMA patients and enabling them to access existing services and facilities. We have augmented our effort to bring the lifesaving SMA therapies to India.
Cure SMA India has played an important role in the launch of Risdiplam, an oral drug for SMA treatment, in India. Presently, we are extensively working with all the stake holders to make the drug accessible to all the SMA patients. We are dedicated to our members, the Indian SMA community, and to the future where we will be a part of achieving universal access to SMA therapies.
Our Mission, Vision and 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 Mission
We are committed to bringing the treatment and cure for SMA to India, making healthcare accessible, inclusive, and insured for all, and creating awareness about SMA and the significance of genetic screening so that we can accomplish a world without genetic diseases.
Our Vision
We dream of a SMA free world and a barrier free universal healthcare for all.
Our Values
Integrity
We strive to carry out all our work with the greatest responsibility and accountability.
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.
Annual Fundraiser
Help raise for the SMA community.
CureSMA Foundation of India through the year carries out series of awareness activities, campaigns and care/support initiaitves. It creates a Corpus fund that is required to support and grow the ability to support registered patients of CureSMA.
What makes CureSMA different?
We’re a top-rated humanitarian organization focused on ending generational lack of access to therapies or treatment for rare disease. Over the past few years, we’ve developed a high-impact network, awareness, advocacy and campaigns that empowers children affected with SMA. With your support, children receive access to health care, educational resources and life-changing programs in safe, critical care.
We ensure 100% privacy for our supporters and complete transparency to our donors as to how their funds are being utilized.
Supporter privacy
Being a top-rated humanitarian organization, we focus on ending generational lack of access to therapies or treatment for rare disease. Over the past few years, we’ve developed a dedicated high-impact network, awareness, advocacy and campaigns that empowers children affected with SMA. With your support, children receive access to the best possible health care, educational resources and life-changing programs in critical care.
Indepth knowledge helps us guide our SMA patients to the most appropriate therapies for them.
Customized programs
Not one shoe fits all and we understand this. Thus, we have tied up with healthcare experts across specialties who guide our patients to the best available therapies, and the most suitable ones for each one of them.
Become a volunteer
Join your hands with us to create a better life and beautiful future for our children
General FAQ's
Frequently Asked Questions
How long will my child survive?
SMA type 1 is an extremely severe form of the disease. Most children with SMA type 1 die before their second birthday.
People with SMA type 2 live into early adulthood and, with proper care, many are living well into adulthood and long.
There are many patients who are living a better life with support from parents. We urge parents to stay positive and try and do the best they can for their SMA child.
Will they get better over time?
Due to the progressive nature of SMA it is very difficult for the patients to get better over time. However, recently we now have Risdiplam approved by DCGI and is commercially launched in India by Roche Pharma. A combination of regular physiotherapy/hydrotherapy, occupational therapy and good Nutritious balanced diet can do wonders in overall quality of life of SMA patients and stop disease progression. Even with medicines SMA patients require constant care and monitoring. We at Cure SMA India have developed multidisciplinary SMA management protocols and best practices that can improve the quality of life and delay its progression to some extent.
There are two other treatments approved by US FDA (Spinraza & ZolgenSMA OR Genetherapy), however, they are still not available in India. Some these medicines may be accessible under Humanitarian/compassionate/management access programs by Pharma/NGO. Even with these medicines constant therapy and protocols need to be followed
For details, contact CureSMA India core team.
What equipment will the child need?
Depending on the child’s age, SMA type, age of onset of SMA, it can range from standing frame, walker, manual wheelchair, power wheelchair, spinal Braces, AFO’s, BiPAP machines, Spirometry, Nebulizer, Oxipulsemeter, Oxygen Concentrator OR Oxygen Cylinder etc.
For ALL age and ALL SMA Types- We recommend ALL parents/patients to have Oxipulsemeter at home as this is a lifesaving device.
Is there any therapy?
Yes, we now have Risdiplam approved by DCGI and is commercially launched in India by Roche Pharma. A combination of regular physiotherapy/hydrotherapy, occupational therapy and good Nutritious balanced diet can do wonders in overall quality of life of SMA patients and stop disease progression.
There are two other treatments approved by US FDA (Spinraza & ZolgenSMA OR Genetherapy), however, they are still not available in India. Some these medicines may be accessible under Humanitarian/compassionate/management access programs by Pharma/NGO. For details, contact CureSMA India core team.
Has my child got an intellectual disability?
SMA does not cause intellectual disability at all. Your child’s intelligence is unaffected. SMA only causes physical disability as the disease progresses. In fact, SMA children/patients are generally smarter and more intelligent than their peers. They are like any other child.
Can my child go to mainstream school?
There is no reason for your child not to attend mainstream school as child has ONLY physical problem. Talk to your local school about the different ways they can provide an accessible education for your child. Many SMA children are high achievers including in India. Please reach out to core team to seek help in Education sector.
What will we need to do around the home?
Modifications such as lifters ramps, toilet grab rails maybe required depending on child age, SMA type, disease onset and progression. Speak to your child and the therapist to know what is best for your child. Also, speak to core team member to know more.
