Latest news with #CureSMAFoundationofIndia
Hans India
21-07-2025
- 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
20-07-2025
- 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.
Hindustan Times
26-05-2025
- Entertainment
- Hindustan Times
Partially blind IGL contestant on PIL against show for mocking disabled: 'Don't need others to decide what's offensive'
Among the many controversies surrounding India's Got Latent, hosted by Samay Raina, one involved allegations of mocking specially abled contestants—including Kushal Bhanushali, a visually impaired comedian who appeared on the show. Recently Kushal uploaded a reel on Instagram taking up the subject in his own way and in an exclusive interview, spoke to us about the intentions behind the post. A post shared by Kushal Bhanushali (@ 'People are judging on behalf of disabled people without asking us what we think. We don't need others to decide what's offensive. Sometimes, we want to be treated like everyone else—and that includes being the subject of jokes too,' he told us. The show came under scrutiny after the Cure SMA Foundation of India filed a petition in the Supreme Court, accusing the host and others of making insensitive remarks about disabled individuals. The NGO works to support children affected by Spinal Muscular Atrophy (SMA), a rare genetic disorder. The petition specifically cited instances from the show where Samay Raina asked a visually impaired contestant, 'Which of your eyes should I look into?' and in another episode had also made remarks regarding the treatment costs for a two-month-old child with SMA. The petitioners argued these comments were humiliating and trivialized the struggles of disabled people. The apex court stressed that freedom of speech is not absolute and does not justify speech that damages the dignity of vulnerable sections of society. Kushal, who has partial blindness, appeared on the show to showcase his comedy skills. He said that despite the controversy, his experience was positive and helped open new opportunities. 'Before this, I struggled to get stage slots. After appearing on the show, I started getting regular calls,' he explained. He also revealed that following his performance, many differently abled people reached out to him. 'They told me watching me gave them the confidence to try stand-up or put themselves out there in public,' Kushal said. Addressing the broader debate about comedy and sensitivity, Kushal emphasised the need for direct communication. 'If something is offensive, let the person it concerns say so. Before assuming anything, just ask,' he advised.
The Print
05-05-2025
- Entertainment
- The Print
SC asks Samay Raina, other influencers to appear over alleged remarks ‘ridiculing' disabled
Observing that the fundamental right to freedom of speech and expression is not absolute, a bench of Justices Surya Kant and N Kotiswar Singh said no one can be allowed to demean anybody under the garb of the right and mulled framing guidelines on social media content concerning the disabled and people with rare disorders. The court termed the influencers' conduct as 'damaging' and 'demoralising' and said some serious remedial and punitive action was needed so that these things don't happen again. New Delhi, May 5 (PTI) The Supreme Court on Monday directed five social media influencers, including 'India's Got Latent' host Samay Raina, to appear before it or face coercive action after a plea alleged that they ridiculed persons having a rare disorder Spinal Muscular Atrophy (SMA) and those suffering from disability on their show. The bench asked the Mumbai Commissioner of Police to serve notice on the five influencers to ensure their presence in the court, failing which coercive action will be taken. Justice Surya Kant said that though after this order a lot of people raising the issue of fundamental rights will start writing articles but the court knows how to deal with these issues. Earlier this year, Raina was booked by Maharashtra and Assam police over derogatory comments on his YouTube show 'India's Got Latent' along with podcaster Ranveer Allahbadia. On February 18, the top court granted interim protection from arrest to Allahbadia while calling his comments 'vulgar' and saying he had 'dirty mind' which put society to shame. Aside from Allahbadia and Raina, others named in the case in Assam are comics Ashish Chanchlani, Jaspreet Singh and Apoorva Makhija. The apex court order on Monday came on a plea of an NGO alleging that the influencers have ridiculed persons having a rare disorder SMA and those suffering from disability on their show. 'The Commissioner of Police, Mumbai is directed to serve notice on respondent nos.6 to 10 and ensure their presence in court on the next date of hearing, failing which coercive steps will be taken against them to secure their presence,' the bench ordered. The bench also sought the assistance of Attorney General R Venkataramani on the PIL of NGO 'Cure SMA Foundation of India' for direction on regulating social media content concerning disabled people and persons with rare disorders. 'Having regard to the sensitivity and importance of the issue raised by the petitioner-Foundation, we request the learned Attorney General for India to assist this Court in the matter,' it said. 'This is very, very damaging and demoralising. There are statutes that try to bring these people into the mainstream, and with one incident, the entire effort goes. 'You should think of some remedial and punitive action within the law against those who have indulged in such acts,' the bench told senior advocate Aprajita Singh, appearing for the NGO. Singh said that in her view this is a case of hate speech, which cannot be allowed under the Constitution. Besides Raina, the bench issued notice to four other influencers Vipul Goyal, Balraj Paramjeet Singh Ghai, Sonali Thakkar alias Sonali Aditya Desai and Nishant Jagdish Tanwar. The bench also arrayed the Maharashtra government as a party in the matter and issued notice to it. The top court sought their responses by July 15. The NGO had referred to the deficiencies in the existing legal framework and urged the bench to formulate guidelines on online content. 'The petitioner seeks to bring to the notice of this court the broadcast of certain online content, media and programmes that are derogatory, offensive, denigrating, ableist or belittling to the persons with disability, or their diseases, or their treatment options,' it said. The NGO said that it was also aggrieved by the lack of any explicit statutory guidelines to sufficiently–regulate the broadcast of such online content which violates the right to life and dignity of persons with disabilities while transgressing the qualified right of free speech and expression. 'The absence of such explicit provisions qua persons with disability gives rise to a legislative gap since it fails to align with the anti-discrimination and dignity-affirming objectives of the Constitution as well as the RPwD Act, thus being violative of Article 14 and 21,' it said. It said there is also no sufficient positive obligation on both the government and private actors to adopt a unique standard of representation of persons with disability in the online domain. 'Despite the aforesaid constitutional mandates, there has been a rampant abuse (both conscious and subconscious) of the online media platforms by various individuals and classes, that has resulted in the systematic objectification of persons with disability – thereby, fundamentally undermining their dignity, agency, and their inalienable right to be represented with respect,' it said. PTI MNL RT This report is auto-generated from PTI news service. ThePrint holds no responsibility for its content.
Time of India
05-05-2025
- Politics
- Time of India
Supreme Court summons Samay Raina, others over alleged mockery of disabled; may set social media norms
Live Events (You can now subscribe to our (You can now subscribe to our Economic Times WhatsApp channel The Supreme Court on Monday issued a strong directive to five social media influencers , including comedian and 'India's Got Latent' host Samay Raina , instructing them to appear before the court in response to allegations that they mocked persons with disabilities and individuals suffering from Spinal Muscular Atrophy (SMA) — a rare genetic disorder. The court warned that failure to appear would result in coercive legal action.A bench comprising Justices Surya Kant and N Kotiswar Singh expressed deep concern over the alleged derogatory content, describing it as 'damaging' and 'demoralising' to the disabled community. The court emphasized that while the right to freedom of speech and expression is protected under the Constitution, it is not an absolute right and cannot be used as a shield to demean others, especially vulnerable court's intervention came in response to a public interest litigation (PIL) filed by the NGO Cure SMA Foundation of India, which alleged that the content in question ridiculed people suffering from SMA and other disabilities. The petition also pointed to a lack of statutory guidelines governing offensive and discriminatory online content and requested the court to formulate comprehensive regulations to safeguard the dignity of disabled individuals in the digital bench directed the Commissioner of Police, Mumbai, to serve notices to the five influencers to ensure their presence during the next hearing. These include Raina, as well as other popular internet personalities like podcaster Ranveer Allahbadia (who was previously granted interim protection from arrest), Ashish Chanchlani, Jaspreet Singh, and Apoorva Makhija. The court added that failure to appear would lead to the use of coercive Surya Kant noted that while the court's decision might spark debate around the limits of free speech, it was well within its rights to uphold dignity and equality for all citizens. 'After this order, many may start writing articles on freedom of expression, but we know how to handle these issues,' he this year, both Maharashtra and Assam police had booked Raina and Allahbadia over their alleged comments during an episode of the YouTube show 'India's Got Latent.' The Supreme Court, during that hearing, had criticised the vulgar nature of the remarks, describing them as shameful and reflective of a 'dirty mind.'On Monday, the court also issued fresh notices to four other influencers: Vipul Goyal, Balraj Paramjeet Singh Ghai, Sonali Thakkar (also known as Sonali Aditya Desai), and Nishant Jagdish Tanwar. It also made the Maharashtra government a party to the case and sought responses from all involved parties by July its PIL, Cure SMA Foundation of India highlighted the absence of a clear legal framework addressing the representation and protection of people with disabilities in digital media. The NGO argued that this legislative gap undermines constitutional guarantees like the right to dignity, equality (Article 14), and life (Article 21), as well as provisions under the Rights of Persons with Disabilities (RPwD) court acknowledged the sensitivity and gravity of the issue and called upon Attorney General R Venkataramani to assist in the case, especially with regard to potentially drafting new guidelines for online content concerning persons with disabilities and rare advocate Aprajita Singh, appearing for the NGO, told the court that the case amounts to hate speech, which cannot be permitted under any constitutional provision. The court agreed and said that immediate legal remedies — both punitive and preventive — must be explored to stop the spread of such harmful its concluding remarks, the bench stressed the long-term harm caused by such derogatory portrayals, noting that decades of social progress and inclusion efforts could be undone by a single act of insensitivity. The matter is now scheduled for further hearing on July 15.
