Who we are
A parent-led community, started in 2014 by a handful of families, that now represents people with Spinal Muscular Atrophy across India.
Cure SMA Foundation of India is a registered public charitable trust with representation across India. From a humble beginning of ten families, we have grown to represent SMA families and individuals across the country.
Each year we support families through counselling for the newly diagnosed, a shared resource pool, SMA clinics, patient advocacy and many other direct services. We work to empower people with SMA to access the services and facilities that already exist — and to bring life-saving SMA therapies to India.
Cure SMA India played an important role in the launch of Risdiplam, an oral SMA treatment, in India. Today we work with all stakeholders to make treatment accessible to every person with SMA. We are dedicated to our members, to the Indian SMA community, and to a future of universal access to SMA therapies.
Mission and vision
To bring treatment and a cure for SMA to India; to make healthcare accessible, inclusive and insured for all; and to raise awareness of SMA and the importance of genetic screening, so that we can build a world without genetic disease.
An SMA-free world, and barrier-free universal healthcare for all.
What guides every decision we make
Integrity
We carry out all our work with the greatest responsibility and accountability.
Balance
We pursue treatment and a cure relentlessly but strategically, balancing optimism with realism.
Collaboration
Researchers, doctors and families together are — and always will be — stronger than SMA.
Respect
Every person with SMA has the right to a dignified life, lived the way they choose.
Compassion
No one is alone in this fight. We offer unconditional support and clear, honest information.
Determination
We will stay strong in our fight for a world free of genetic disease, whatever challenges come.
There is no right way to live with a disease like SMA. Every person's experience is different, and it is every family's right to decide what SMA means to them.
Milestones
- 2014
A small group of parents of children with SMA come together in January to support one another and raise awareness.
- 2017
Kolkata chapter runs its first multidisciplinary SMA clinic. We meet the Union Health Minister and take part in the first World Congress on Accessibility to Medical Products (WHO & MoHFW).
- 2019
India's first National Conference on SMA at Science City, Kolkata. SMA clinics start with Sir Ganga Ram Hospital (Delhi) and PGI Chandigarh. A humanitarian access programme for Spinraza is launched with Direct Relief.
- 2020
Our first virtual SMA Awareness Month: webinars, a candle-lighting ceremony and competitions for SMA warriors. COVID-19 care guidelines published with a national task force.
- 2021
Risdiplam (Evrysdi), the first approved SMA therapy in India, is launched — after years of work with the regulator, industry and doctors.
- 2025
SMArtCon 2025, our third national conference. Femina Miss India 2020 Manasa Varanasi joins as Brand Ambassador.
Note for the team: timeline compiled from the old website's news posts. Please check, and add milestones from 2022–2026.
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.