No family should face SMA alone.
We are a community of people living with SMA, their families, doctors, and researchers — working since 2014 for early diagnosis, better care, and affordable treatment for every Indian with SMA.
How can we help you?
I’m a parent or living with SMA
Understand the diagnosis, find SMA-aware doctors, and connect with families who have been there.
I want to help
Fund treatment and equipment, volunteer your skills, or bring your company on board as a CSR partner.
I’m a doctor or researcher
Clinical summaries, Indian standards of care, and our national SMA conference, SMArtCon.
What is Spinal Muscular Atrophy?
SMA is a genetic condition that affects the nerve cells in the spinal cord which control movement. Muscles used for crawling, walking, sitting up, swallowing, and breathing become progressively weaker.
It is the most common genetic cause of death in infants — but it does not affect intelligence, and with the right care and treatment, children, and adults with SMA can lead full lives.
Learn about SMAGenetic. Caused by a missing or faulty SMN1 gene, inherited from both parents.
Four main types. From Type 1 in young babies to Type 4 in adults.
Treatable. Approved therapies now exist, and treatment has been available in India since 2021.
Early diagnosis matters. A simple blood test confirms around 95% of cases.
From diagnosis to daily life, we walk alongside families
Founded by parents of children with SMA, we combine practical support for families with advocacy for policies that make treatment reachable.
Family support
Counselling for newly diagnosed families, genetic counselling, and a parent network across India.
SMA clinics
Multidisciplinary clinics with neurologists, orthopaedics, pulmonologists, dieticians, and physiotherapists.
Advocacy
Working with the government, regulators, and industry for affordable access to SMA treatments.
Awareness
Conferences, webinars, and SMA Awareness Month every August, so SMA is diagnosed early.
From 10 families to a national community
“People do not realise that SMA does not affect the intelligence of any person.”
Karan Shah grew up with Type 3 SMA in Mumbai, a city that is not wheelchair-friendly. Read how he found his voice.
Help a family facing SMA today
We receive no government funding. Your gift pays for counselling, clinics, assistive devices, and hospital care for families who cannot afford them. Donations are eligible for tax benefit under Section 80G.