In an exclusive chat with The Pioneer, Srilakshmi Nalam, co-founder of the Cure SMA Foundation of India, discusses her personal journey of caregiving, the growing urgency for carrier screening, and why the Foundation’s latest awareness run is as much about saving futures as supporting present battles
Needhi Gattani
When five families from across India, each grappling with the devastating diagnosis of Spinal Muscular Atrophy (SMA) in their children, joined hands, they gave birth to a powerful movement—Cure SMA Foundation of India. What began as a shared pain has since evolved into a nationwide mission to spread awareness, advocate for early diagnosis and prevention, and support families affected by one of the country’s most under-recognised genetic disorders.
In an exclusive conversation with The Pioneer, Srilakshmi Nalam—co-founder, trustee, Hyderabad-based tech professional, and mother to an SMA warrior—opens up about the emotional and medical journey of caregiving, the growing urgency for genetic screening, and the Foundation’s tireless efforts to ensure that no child or family suffers in silence.
“The number of carriers is increasing,” begins Srilakshmi. “As more carriers are born unknowingly, the likelihood of them meeting and marrying each other increases.” According to Indian research, the carrier frequency is about 1 in 38 people, which is higher than in countries like the US (1 in 40) and the UK (1 in 16).
She adds, “There is an increase in children affected by SMA, and many are lost because there is no cure—though treatments are now available.” In India, only one treatment—Risdiplam—has government approval and costs about ₹72 lakhs per year, to be taken for life. Another treatment exists, priced at approximately ₹16 crores, but it is not approved in India.
Supporting children living with SMA is crucial, especially given the rising numbers and limited treatment access.
Being the parent of an SMA child herself, Srilakshmi understands the challenges firsthand and is committed to spreading awareness. She also credits improvements in technology and the increasing knowledge among medical professionals for enabling earlier diagnoses.
“Many parents, even in the IT industry or elsewhere, now have infants younger than one year being diagnosed thanks to improved technology and increased awareness among doctors,” she shares. “Early diagnosis at two to three months can help manage the condition better.”
However, she stresses that most parents only become aware of SMA when their child is diagnosed. “Awareness, combined with screening, can help prevent it,” she says. A simple, affordable blood test can determine whether someone is a carrier or not.
This year’s campaign theme, ‘Be SMArt: Screen Early, Prevent SMA’, holds pressing urgency. “Our run for SMA is for two reasons—support for children who are already suffering, and the prevention of SMA in future generations through carrier screening tests,” explains Srilakshmi.
While this run marks its third edition, they’ve observed a significant change in public perception. “People now have a better understanding of what SMA is,” she says. The Foundation is also actively collaborating with more corporations to further amplify awareness.
“Currently, we’re promoting awareness through Microsoft, and more companies can join us. We believe young people in corporations are a key demographic,” says Srilakshmi.
She has conducted awareness sessions at companies like Google, focusing purely on education and prevention. “We do not charge anything; all these efforts are free. We just want people to be aware of SMA and to prevent it as much as possible,” she adds.
Despite the growing awareness, fundraising remains a challenge. “While fundraising has not seen much growth, awareness about SMA as a genetic disorder has increased,” says Srilakshmi. The funds collected through registrations and donations are primarily used to provide essential equipment like motorised wheelchairs, orthotic braces, transfer chairs, and non-invasive ventilators (BiPAP machines). “We also support related hospitalisation costs,” she adds.
“These children, though mostly wheelchair-bound, have very high intelligence,” she shares. Their cognitive abilities are unaffected—many go on to attend IITs, become writers, lawyers, artists, CAs, and bankers, excelling in various fields.
However, education remains a major hurdle. “Many children are left without proper schooling simply because they cannot get admissions. Schools often demand a caregiver’s presence at all times,” says Srilakshmi.
She reminds parents, “No school can refuse admission to a physically challenged child who is of normal intelligence. Education boosts confidence and independence. Once financially independent, they earn respect—not sympathy.”
A major barrier in tackling SMA is the lack of public understanding. “People don’t understand the statistics. Every two hours, a child with SMA is born,” she explains. “The number of carriers is very high. In Telangana alone, we have around 150 registered patients—but we don’t know how many more remain undiagnosed, especially in rural areas where doctors may not be exposed to these disorders.”
To bridge these gaps, SMA clinics are held every two months across the country. These are multidisciplinary clinics, bringing together specialists from neurology, orthopaedics, plastic surgery, and more.
“In Hyderabad, these are held at Rainbow Hospital and NIMIS Hospital,” says Srilakshmi. “Parents don’t need to run from doctor to doctor—it’s all managed in one place.”
She appeals to the government to prioritise early detection and broader treatment access. “We need to promote newborn screening, where a child is tested within the first week. Early detection means treatment can begin sooner,” she says.
Still, prevention is better than detection, and she urges policymakers to support awareness efforts. “Any support offered voluntarily is appreciated—people can donate any amount, big or small,” she concludes.
Box:
Spinal Muscular Atrophy (SMA) is a rare genetic disorder that primarily affects infants under the age of one and up to one-and-a-half years. It impacts the motor nerves connecting muscles, making basic activities such as sitting, standing, or rolling over nearly impossible.
SMA is a progressive disorder, worsening over time. What makes it especially complex is that parents are usually carriers of the condition—healthy themselves but unknowingly passing it on.
Each parent carries one defective gene, and when two carriers have a child, there is a 25% chance of the child having SMA. Carrier screening is the only way to prevent it.
