Frequently asked questions

It depends a great deal on the type of SMA, and on treatment and care. Without treatment, most children with Type 1 did not live beyond their second birthday. People with Type 2 live into adulthood, and with proper care many live well into adulthood. People with Type 3 and Type 4 usually have a near-normal life expectancy.

New treatments and good supportive care are changing outcomes. Many people with SMA are living full lives with the support of their families. We encourage parents to stay hopeful and to do the best they can for their child — and to lean on us.

SMA is progressive, so without treatment it does not get better on its own. Approved treatments can slow or stop progression, and some children gain new skills, especially when treatment starts early. See Treatments in India.

Even with medicines, people with SMA need constant care and monitoring. Regular physiotherapy or hydrotherapy, occupational therapy and a nutritious, balanced diet can do wonders for quality of life. Our care guides explain how.

Yes. Risdiplam (Evrysdi) was approved by the DCGI and launched in India by Roche in 2021. Other treatments approved abroad may be available through access programmes. Availability and costs change, so please contact our team for the latest information.

No. SMA does not cause intellectual disability. Your child's intelligence, curiosity and ability to learn are unaffected — SMA only causes physical disability. Children with SMA are like any other child.

Yes. There is no reason a child with SMA cannot attend a mainstream school. Talk to your local school about how they can make education accessible — ramps, ground-floor classrooms, accessible toilets and help with writing or carrying. Many children with SMA in India are high achievers. Our team can help if you face difficulties with admissions.

It depends on age, type of SMA and how the condition progresses. Equipment can include a standing frame, walker, manual or power wheelchair, spinal brace, ankle-foot orthoses, BiPAP machine, cough-assist device, nebuliser, pulse oximeter and oxygen. See Physiotherapy & mobility and Breathing.

We recommend every family has a pulse oximeter at home — it can be lifesaving.

Depending on age, type of SMA and progression, families may need ramps, a hoist or lifter, and grab rails in the toilet and bathroom. Speak to your therapist about what is right for your child, and to our team for practical advice.

Brothers, sisters and other close relatives may be carriers. Carrier testing is a simple blood test, and genetic counselling can help you understand the results. See Genetics & inheritance.

Yes. Cure SMA Foundation of India is approved under Section 80G of the Income Tax Act, 1961, so donations are eligible for tax deduction. See how to request your 80G receipt.

Email info@curesmaindia.org with your name, address, PAN, amount, date and transaction reference. Receipts are sent within 10 working days.

No. We maintain full confidentiality of donors. Your details are never sold or exchanged with any other organisation, and we honour opt-out requests. See our privacy policy.

Please contact us before donating from a foreign account so that we can advise on the right channel.

We are a parent-led registered public charitable trust, founded in 2014 by parents of children with SMA. Our team includes parents, people with SMA and volunteers across India, guided by a scientific advisory team.

No. Registration, counselling and our support programmes are free for people with SMA and their families.

No. We rely on contributions from members, individual donors and partners.