Latest news with #SpinalMuscularAtrophy
The Hindu
6 hours ago
- Health
- The Hindu
Genetic screening emerging as key to better IVF success rates, say Kolkata experts
As World IVF Day (July 25) approaches, fertility experts in Kolkata say there is an urgent need to integrate genetic screening into mainstream fertility care to improve chances of healthy babies and avoid failed pregnancies. Emili Banerjee, Genetic Counsellor at Genome – The Fertility Centre in Kolkata said that the procedure of Preimplantation Genetic Testing (PGT) to select embryos without abnormalities for implantation can have better assurance of a successful pregnancy and has better chances of a healthy baby. She emphasied on how genetic testing can be beneficial 'not only for those who are seeking IVF due to infertility, but also patients who have had recurrent pregnancy failures.' Genome held a session on on July 23, on how to 'Decode Infertility with Genetics' where doctors and clinicians spoke at length about how advanced genetic screening is transforming the success rates of IVF and identifying the underlying causes of unexplained infertility. There was an emphasis on how genetic screening has been of exceptional service to patients who had no hope of bearing a healthy child due to being carriers of serious inherited conditions. Some of them have genetic issues in their extended families which lead to failed pregnancies, but couples remain unaware of it for years. 'It is not obligatory for couples with genetic problems to seek sperm or egg donation, to opt for adoption or to refrain from marriage or childbearing entirely,' Genome Director of Clinical Service, Dr. Sanjay Das Gupta said, 'PGT helps to determine if the baby would be born with inherited disorders such as Thalassemia or Spinal Muscular Atrophy (SMA) before the pregnancy even occurs.' As a medical expert in the field of IVF, Dr Das Gupta suggested that when a couple is not able to conceive through natural conjugal relationship, but both the partners are healthy and have no apparent issues with their reproductive systems, there can be underlying genetic issues that can lead to unsuccessful pregnancies. That is why in such cases, genetic screening can help bring about positive change. An integrated, team-based strategy can optimize the outcomes of assisted reproductive technology and guide patients to make informed reproductive decisions. The session conveyed how genetic screening is not rare or optional but rather a keystone in modern fertility care.
Hans India
3 days ago
- Health
- Hans India
Cyberabad Commissioner backs ‘Run for SMA 2025' drive
Hyderabad: Cyberabad Police Commissioner Avinash Mohanty, alongside Joint Commissioner Traffic Dr Gajarao Bhupal, has unveiled the official poster for the 'Run for Spinal Muscular Atrophy (SMA)' and extended his support to this vital public health awareness initiative. Avinash Mohanty emphasised that while SMA treatment is important, prevention through awareness and early screening is even more critical. Commending the SCSC Health Forum for organising the 'Run for SMA', he noted that such initiatives are vital, especially given the high cost of treatment. He stated that collective efforts like these reflect a commitment to positive change. Srilakshmi Nalam, Co-founder and Trustee of Cure SMA India, announced that the Cure SMA Foundation of India, a non-profit organisation dedicated to supporting families affected by Spinal Muscular Atrophy (SMA), is organising the third edition of Run for SMA – 2025 on Sunday, 10 August at Gachibowli Stadium. Srilakshmi stressed the necessity for collaboration among medical professionals, research bodies, corporations, and the government to create a sustainable ecosystem for rare disease families in India. While treatment options have recently become available in India, their extremely high cost renders them inaccessible to most. Hence, she added, awareness and prevention, particularly through genetic carrier screening, are crucial to reducing the disease burden in future generations. 'Run for SMA' forms part of the global SMA Awareness Month, observed in August. The run includes timed and non-timed running categories – 21K, 10K, 5K, and a 5K non-timed event – with attractive cash prizes for winners in various categories. Dr Radha Rama Devi, Senior Geneticist and Paediatrician at Rainbow Children's Hospital, Dr Giriraj Chandak, former Chief Scientist at CSIR–CCMB, Naved Alam Khan, CEO, Society for Cyberabad Security Council, and Cure SMA India trustees Srilakshmi and Archana, along with other representatives, were present at the event.
The Hindu
4 days ago
- Health
- The Hindu
Third edition of ‘Run for SMA' to be held on August 10 at Gachibowli Stadium
The third edition of Run for SMA will be organised by the Cure SMA Foundation of India at Gachibowli Stadium in Hyderabad on August 10. The event is part of the global Spinal Muscular Atrophy (SMA) Awareness Month observed in August. A press conference announcing the event was held at the Cyberabad Commissioner's office, with Commissioner of Police Avinash Mohanty unveiling the poster and extending his support to the awareness initiative. He said that while SMA treatment is important, prevention through awareness and early screening is even more critical. He appreciated the SCSC Health Forum for organising the event and noted that such efforts are essential, especially since treatment is expensive. Srilakshmi Nalam, Co-founder and Trustee of Cure SMA India, said there is a need for collaboration between doctors, research bodies, companies and the government to build a support system for families.
Time of India
4 days ago
- Business
- Time of India
Janpath: A people's path now forgotten
If somebody writes an epitaph to Sangita, it should be headlined 'Happy Soul'. Nothing fazes her. No challenge is too big. A fan of James Bond's 'never say die' spirit, just like him she thrives on adrenalin rush as she fields every curveball life throws her way. Sangita is a person with multiple disabilities. A patient of Spinal Muscular Atrophy (SMA), Sangita is a wheelchair user and hearing aids user. For the past 10 years, she has been whizzing past life in a wheelchair, notching professional milestones. She believes nothing is insurmountable, certainly not limitations imposed by disabilities. Sangita has three decades of experience in the media, content and communications industry across verticals and industries. She has been associated with the development and disability sector and featured in the first Directory of Development Journalists in India published by the PII. She has also functioned as a media representative of the Rehabilitation Council of India and has conducted various S&A programmes for bureaucrats. Sangita is the founder of Ashtavakra Accessibility Solutions Private Limited, a social enterprise dedicated to the inclusion of the disabled. LESS ... MORE The history of Janpath is older than you or me. Older than modern Delhi itself, in some ways. Once the beating heart of Lutyens' Delhi, Janpath was more than a road—it was a rhythm. A pulsating, living artery of craft, culture, and commerce that brought together locals, domestic tourists, international backpackers, and curious drifters, all drawn to its kinetic charm. If Delhi was a body, Janpath was the nerve that lit it up. The name Janpath—literally, The People's Path—wasn't just poetic branding. It was an ethos. In a city known for high walls, power corridors, and social silos, Janpath was democratic. You could be a diplomat's daughter or a first-time traveller with a shoestring budget, and you'd still end up sipping cold coffee from Depaul's and buying a pair of handmade earrings from a Rajasthani vendor who'd swear they were silver. Everyone bargained. Everyone lingered. Everyone returned. Before it became Janpath, the road was part of Queen's Way during the British Raj, constructed as a ceremonial boulevard alongside the grand Central Vista. But while Rajpath (now Kartavya Path) stayed tethered to officialdom, its sister street—Janpath—broke free. It became the people's republic of small pleasures. Each kiosk on Janpath was a time capsule of regional identity. Gujarat sent its mirrorwork. Kashmir sent its pashmina. Nagaland sent beads and cane. Rajasthan sent block prints. West Bengal sent terracotta. Everything that you'd otherwise need to travel the country to collect—Janpath brought it all to one crowded street. It was India's pop-up museum of the handmade, the homespun, the street-smart. My association with Delhi—and with Janpath—is older than I am. My parents lived in Delhi in the '60s, and we returned each year during the school holidays. Some of my earliest memories involve the scent of sandalwood wafting through the stalls, the gleam of copper bells, the feel of cotton kurtis hanging loosely on metal rods, and the sound of languages—so many languages—mingling in the air. Later, as a student at Delhi University, Janpath became a ritual. A midweek escape. A happy place. We'd hop on a bus with 20 rupees in our pockets and the whole day ahead. Wandering. Laughing. Browsing. Then ending the day with a snack from a nondescript joint or a creamy cold coffee from Depaul's, which, like Janpath itself, seemed to never change. Years later, as Managing Editor of India Now, the India Brand Equity Foundation's flagship publication, I had the chance to walk those lanes again—but this time professionally. I was reporting a feature story on legacy markets of Delhi and their role in India's cultural soft power. Naturally, Janpath was on the list. I retraced my steps through the market, unearthing generational tales from each store. It was a walk down memory lane—with a journalist's notepad in hand. Stories of a grandfather or great-grandfather setting up shop when the market came up, of ministers' wives and international dignitaries in search of 'authentic India', and of tourists from across the world came pouring out. It took me several visits to Janpath to piece their stories. I remember scribbling notes furiously while sipping Depaul's iconic coffee and thinking: this place deserves to be on the world map. But something had already started to slip even then. The store owners also spoke of declining footsteps and revenue. Then came the silence. Not the silence of nostalgia, but of absence. My sojourns to Janpath ended abruptly when I became a wheelchair user. A broken footpath, a single step, a crowded walkway—these small obstacles become walls when you move on wheels. Inaccessibility crept in like a slow disease. Not because Janpath had changed all at once, but because the city hadn't cared to change with me. Delhi has always had a complicated relationship with accessibility—beautiful on the surface, brutal beneath it. And yet, my love endured. Like many things in life, it became long-distance. I'd drive by Janpath just to feel close. I'd leave the engine running while my driver dashed into Depaul's for my regular. I'd sit parked illegally, scanning for traffic cops, heart swelling with the familiar noise and scent of that place. A fragment of a former routine—but one that kept the memory alive. Because Janpath was still alive. Until it wasn't. I visited recently. I wheeled in with hope—and yes, I ended up shopping. I found those handcrafted juttis you never find online. I haggled over oxidized jewellery. I tried on funky trendy and dirt cheap shades at the same stall I'd known all my life. It was a hot, muggy day, but the joy was real. And I still ended the visit with a cold coffee, thick with nostalgia and slightly over-sweet. But something had shifted. The iconic bookstore in Janpath's cul-de-sac corner–now a closed chapter. Several stalls—gone. Whole sections—dusty, dirty and dead. Piles of garbage waiting forlornly. Janpath now wears decay like a borrowed coat. The grit that once gave it character now just feels like neglect. What was once a wild, colourful jungle of creativity now feels like a museum no one curates. A place caught between its legacy and its future, waiting for someone to care. A makeover is no longer a matter of taste—it's a matter of survival. Because cities have short memories, and public spaces don't preserve themselves. Once lost, Janpath won't come back in the same form. And if we're not careful, we'll wake up one day to find it replaced by some sanitised arcade that sells nothing handmade, tells no stories, and caters to no one except global brands and real estate profits. And accessibility? Perish the thought. Someone has attempted a tactile path—but it's as if the contractor installed it with their eyes closed. It winds awkwardly through the market—starting nowhere, ending nowhere. It loops awkwardly around obstacles, and ends in a dead end – a closed door literally. A tragicomic token gesture, more insult than inclusion. It's not just about wheelchair access; it's about dignity. About making sure everyone can participate in the city's pleasures. We can wait a little longer for Sugamya Bharat. But can we at least get a Swachh Bharat in the meantime? Clean streets. Working drains. Thoughtful footpaths. Basic respect. Janpath was never about perfection. It was about possibility. About bumping into strangers, discovering something unexpected, and walking away with more than you bargained for. It was—and still can be—a space where culture is lived, not just displayed. Today, it stands on the edge. Beloved Janpath, I rue your ruin. But I haven't given up on you yet. You gave us so much—memories, music, mayhem, and meaning. You were our informal embassy of Indian identity. A market of the people. A street of stories. Thank you—for a happy day. For many happy days. Nostalgia works like dopamine. But preservation works like love. Let's show Janpath some. Before it's too late. Facebook Twitter Linkedin Email Disclaimer Views expressed above are the author's own.
Gulf Today
5 days ago
- Health
- Gulf Today
Al Jalila Children's Hospital crosses 100 treatments for Spinal Muscular Atrophy
Al Jalila Children's Hospital, part of Dubai Health, and the only children's hospital in the UAE, has completed over 100 treatments for patients with Spinal Muscular Atrophy (SMA). Dr Mohamed Al Awadhi, Executive Director of the Dubai Health Women and Children's Campus, said, "Reaching more than 100 treated cases of SMA reflects Dubai Health's commitment to making world-class care accessible to all children. At Al Jalila Children's Hospital, we follow an integrated, patient-centred approach that supports every phase of the treatment journey. Every step is managed with precision and compassion to put the patient first. Yaqeen's case highlights the strength of our multidisciplinary model and our commitment to ensuring that children with complex conditions like SMA receive the highest standard of care under one roof.' Dr Haitham Elbashir, Consultant Pediatric Neurorehabilitation at Al Jalila Children's Hospital, said, "Zolgensma is a transformative therapy that offers children with SMA the chance to regain strength and function early in life.' The completion of over 100 SMA treatments at Al Jalila Children's reflects the strength of Dubai Health's specialised pediatric services and its commitment to delivering high-quality care for children with complex medical needs. WAM
