Latest news with #Thalassemia
The Hindu
3 days ago
- Sport
- The Hindu
Thalassemia Awareness Run by NTR Trust draws enthusiastic crowd in Visakhapatnam
A large number of people turned out with great enthusiasm for the Thalassemia Awareness Run organised by the NTR Trust along Beach Road on Saturday. The event was flagged off by NTR Trust Managing Trustee and wife of Chief Minister N. Chandrababu Naidu, Nara Bhuvaneswari, along with former Olympic weightlifter Karanam Malleswari. Music Director SS Thaman and Home Minister V. Anitha also participated in the programme, lending their support to the cause. The run, which commenced near the Kali Mata Temple, featured three categories — 10k, 5k, and 3k. Participants ranged from teenagers and college students to senior citizens, all showcasing remarkable energy and commitment to the cause. Speaking at the concluding ceremony, Ms. Bhuvaneswari underscored that the primary aim of the event was to raise awareness about Thalassemia, a serious genetic blood disorder. She also highlighted the NTR Trust's broader commitment to social service, citing initiatives such as blood donation drives, health camps, scholarships for underprivileged students, and women empowerment through the 'Stree Shakti' programme.
The Hindu
5 days ago
- Health
- The Hindu
Thalassemia patients call for standardised tests to reduce transfusion-transmitted infections
On Thursday (July 17, 2025), the Thalassemia Patients Advocacy Group (TPAG), along with legal and health experts, called for the need to strengthen blood safety practices across the country – particularly the need for a standardised test to screen blood donations – to reduce the risk of transfusion-transmitted infections. Following the discussion, held at India International Centre in Delhi on Thursday (July 17, 2025), the group said they would be submitting their recommendations to stakeholders including state and central governments. A 23-year-old Thalassemia patient from Kolkata, present during the discussion, shared her experience of contracting dengue and then testing positive for HIV, to which lack of blood screening could have contributed. She said, 'From the age of two, I have been taking blood transfusions. As a Thalassemia patient, I would require it every 21 days. When I was in Class 8, I contracted dengue and then tested positive with HIV. I don't know for sure if I got it during the blood transfusion or not, but the testing has an important role to play.' At present, Nucleic Acid Testing (NAT), a highly sensitive molecular technique used to screen blood donations for infectious diseases, is used in some hospitals. While it is treated as a gold standard, it is not mandatory across the country. Tuhin A. Sinha, a BJP spokesperson present during the discussion vowed to the group that he would help them take the dialogue forward. Speaking about the importance of NAT testing, he said, 'The Delhi government hospitals have been quick to ensure that it is in place. But one of the important steps should be to develop advocacy for implementing it across the country.' He also suggested incentivising blood donations, saying, 'The more people join the ecosystem, either by way of espousing the idea of donating blood, it will lead to the institutionalisation of systems where checks and balances can be implemented more aggressively.' The discussion was moderated by Anubha Taneja Mukherjee, Member Secretary of TPAG, which is a network of over 10,000 thalassemia patients in the country. She said, 'Based on today's discussion, we will send recommendations to stakeholders including the government, and government agencies.' The recommendations included standardised blood transfusion practises and a mandate for NAT, a national-level blood donation campaign involving influencers, mandatory thalassemia screening for pregnant women. She added that in an attempt to reduce dependence on blood transfusion, hospitals should also make available, novel therapies such as gene therapy. During the discussion, P.C. Sen, a Supreme Court advocate, spoke about the legal and ethical responsibilities of the state and institutions to ensure pathogen-free blood as a constitutional right. Meanwhile, Professor N.K. Ganguly, former Director General of Indian Council of Medical Research (ICMR) suggested an approach that would also involve patients of other blood disorders such as sickle cell anaemia.
Hans India
09-07-2025
- Health
- Hans India
MS Education Academy honoured for supporting Thalassemia-afflicted kids
Hyderabad: In a special ceremony held in Hyderabad, the Thalassemia Sickle Cell Society (TSCS) honoured MS Education Academy for its exemplary contribution towards the education and empowerment of children suffering from Thalassemia. Founder and Chairman of MS Education Academy, Mohammed Lateef Khan, along with Managing Directors Anwar Ahmed and Dr Moazzam Hussain, were felicitated for their continuous and generous support towards this noble cause. Recognising the financial hardships faced by families of Thalassemia-affected children, MS Education Academy has opened admissions free of cost in its institutions—MS Creative School, MS Junior College, and MS Degree College—for such students. So far, hundreds of children have benefited from this initiative and are receiving quality education without any financial burden. In addition to education, MS Education Academy regularly organises Blood Donation Camps to support Thalassemia patients, encouraging its staff and faculty to voluntarily donate blood. In appreciation of these humanitarian efforts, TSCS honoured the leadership of MS Education Academy with commemorative mementos. The event was graced by Chandrakant Agarwal (President, TSCS India), Ratnavali Kotapalli (Vice President), Dr Suman Jain (Secretary & CEO), M A Aleem Baig (Joint Secretary), Mohammad Ameen (Executive Member), and well-known social media influencer Abu Aimal. A special citation was also presented during the ceremony, acknowledging the Academy's contribution: 'TSCS appreciates your unwavering support and generous contribution towards the education and empowerment of students affected by Thalassemia and Sickle Cell Anaemia.' Thalassemia-affected students and their parents also attended the event and expressed heartfelt gratitude to MS Education Academy, praising the institution for providing their children with the opportunity to pursue education with dignity and respect—a gesture they described as truly admirable.
Newsweek
19-06-2025
- Health
- Newsweek
CEO Says New Tool Allows Couples To 'Genetically Optimize Their Children'
Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources. Newsweek AI is in beta. Translations may contain inaccuracies—please refer to the original content. The CEO of a U.S.-based biotech company that developed software to enable parents to select embryos used for in vitro fertilization (IVF) based on genetic markers, told Newsweek that this "genetic optimization" would help people "live longer and thrive." Kian Sadeghi created his DNA testing and analysis company Nucleus to "give parents direct insights into whatever matters most to them when they choose their embryo." Nucleus offers the world's first genetic optimization software that allows parents to have preferences over their child's genetics during the IVF process, with the aim of reducing preventable genetic disease. "There's no moment when parents need to know how genetics will impact them and their loved ones more than when they're preparing to start a family," Sadeghi said. Genetic disease impacts millions of children in the U.S., with Down syndrome, Thalassemia, cystic fibrosis, Tay-Sachs disease and sickle cell disease among the most common. As well as screening for these sorts of conditions, Nucleus also analyses embryos for chronic conditions like Alzheimer's disease and heart disease. In total, it checks for almost 1,000 traits and conditions, from cystic fibrosis to heart disease, cancer risks, and mental health conditions like anxiety and ADHD. Kian Sadeghi, CEO of biotech company Nucleus, told Newsweek that "genetic optimization" would help people "live longer and thrive." Kian Sadeghi, CEO of biotech company Nucleus, told Newsweek that "genetic optimization" would help people "live longer and thrive." Newsweek/Getty Images/Canva Sadeghi said that many families "have experienced death at the hands of these common conditions and seek to prevent similar suffering." He told Newsweek that his own experience of the loss and grief brought on by genetic disease was actually what guided him to set up his company. When he was 7 years old, his 15 year-old cousin suddenly died in her sleep from what he said was a "preventable genetic disease." "My parents were heartbroken and terrified that my siblings and I would have the same fate," he said. Being so young at the time, Sadeghi said "it didn't make sense to me why someone would drop dead at 15, when other 15-year-olds are fine." He said that the loss of his cousin was the the first time he "intuitively grasped this idea of generational health." "Seeing this genetic lottery, when someone wins and someone doesn't, really stuck with me," he said. As he grew up, he developed a keen interest in genetics in school and by the time he got to college he was determined to create software that "could prevent what happened to my family from happening to anyone else in the world." After dropping out of the University of Pennsylvania, he then set up Nucleus in 2020, and believes that his software will spare families from the grief he himself felt when he lost a loved one to a preventable genetic disease. Kian Sadeghi, CEO of Nucleus, a company that has developed software to help parents screen their embryos for genetic conditions. Kian Sadeghi, CEO of Nucleus, a company that has developed software to help parents screen their embryos for genetic conditions. Uncredited/Nucleus Sadeghi added that his company is "democratizing access to genetic information," as at the moment, he said genetic testing results can be hard to decipher without a clear explanation from a doctor. "We're putting comprehensive, actionable data directly in parents' hands with tools that let them actually understand and compare their options," Sadeghi said. However, given that the software allows parents to genetically "optimize" their children, it raises various ethical questions, ones which members of the public have taken to social media to ask. Some social media users on X, formerly known as Twitter, voiced their concern that genetic screening could have unknown, secondary impacts, while others criticized Nucleus for oversimplifying the issue, saying "we can't predict longevity even for adults, so how can we possibly do this for embryos." Discussing ethical issues raised by the public, Sadeghi said, "until now, how this science would impact how we have children and how we would deploy it has been discussed only behind closed doors—not in public." He said now that Nucleus has announced the availability of the technology, the public has the opportunity to "listen to each other, hear each other out, and use this information to establish their views to ensure the insight Nucleus Embryo can provide is put to good use." Sadeghi added that the best way to have the public understand the technology was "to have them use it," and that it was important to make it accessible to as many people as possible. There have also been concerns raised about whether genetically optimizing IQ in embryos could increase risk of mental health conditions like schizophrenia. Sadeghi said that his company's report on schizophrenia risk for embryos noted that the condition is linked to both bipolar disorder, as well as intelligence, and that ADHD, OCD, Alzheimer's disease and autism were also linked to intelligence. He added that "we always educate parents on links between high disposition to neurological diseases and exceptional traits." "When you analyze genes for disease risk, you're also uncovering insights into traits, since both share a common genetic foundation," he said. The software, while being offered to parents to help them prevent their children from developing genetic disease, therefore does come with ethical considerations—considerations which will continue to be explored and discussed in public, now that the technology has brought the issue into the spotlight.
The Hindu
14-06-2025
- Health
- The Hindu
Hyderabad marks World Blood Donor Day with awareness drives, donations camps
Hospitals across Hyderabad marked World Blood Donor Day 2025 on Saturday (June 14) with awareness campaigns, donation drives and public engagements to highlight the critical need for voluntary blood donation. At Nizam's Institute of Medical Sciences (NIMS), the day began with an awareness rally led by Sudhir Kumar, head of the Blood Donation Centre. Medical and nursing students, physiotherapy and paramedical trainees and hospital staff across departments participated. NIMS also inaugurated a new cold storage facility capable of storing up to 1,000 units of blood. The facility is expected to enhance the institute's ability to preserve blood components efficiently. Meanwhile, at Raj Bhavan, Governor Jishnu Dev Varma, who also serves as the president of the Indian Red Cross Society (IRCS-Telangana), inaugurated a voluntary blood donation camp at the community hall on the premises. Addressing donors and volunteers, he described blood donation as a sacred service and spoke about its transformative impact on families during medical emergencies. He lauded the efforts of Red Cross volunteers, corporate CSR partners and institutional motivators in promoting a culture of safe and voluntary blood donation. The Governor also presented certificates to donors and honoured NGOs and institutional representatives for their contribution to the cause. Kamineni Hospitals, LB Nagar, organised a large-scale blood donation camp with a special focus on supporting children suffering from Thalassemia. Over 100 donors, including doctors, nurses, and staff, took part in the initiative. The hospital recognised volunteers, notably Dayakar Reddy, who has donated blood over 100 times and was felicitated for his commitment. Adding to the awareness efforts, B. Krupan Kumar, senior consultant physician at Apollo Hospitals, Hyderguda, issued a public message underscoring the life-saving potential of blood donation. 'Blood is the elixir of life, no cell in the human body can survive without it. In times of injury, trauma or medical emergency, blood donation can mean the difference between life and death,' he said.
