Researchers honoured for identifying Newfoundland curse

first_imgST. JOHN’S, N.L. – A research team was honoured Wednesday for identifying the cause of the “Newfoundland curse” — a deadly heart condition that has afflicted Newfoundland families for centuries.The condition, known to the medical community as arrhythmogenic right ventricular cardiomyopathy, is a genetic cardiac muscle disorder that often shows no symptoms before sudden cardiac arrest.A team from Memorial University of Newfoundland received the Governor General’s Innovation Award for leading research that identified the genetic mutation and the cause of the lethal heart attacks.The team also developed a blood screening test for people at risk.“It really is a life-saving kind of research endeavour,” said Daryl Pullman, who is being honoured along with fellow researchers Terry-Lynn Young, Kathy Hodgkinson and Sean Connors.“We’re accepting the award on behalf of many others, on behalf of the many families who have participated, coming forward to donate their samples and their histories.”ARVC affects people worldwide, but there is a concentration in Newfoundland, where the mutation has already been specifically linked to more than two dozen families.Many people with the condition feel perfectly healthy before the first fatal heart attack.Eighty per cent of men and 20 per cent of women with ARVC die by age 50. Pullman said it has claimed the lives of men in their late teens and early twenties.As well as developing a blood test to detect the previously hidden condition, the team also developed a preventative treatment for the disease.Connors, a cardiologist, developed a small defibrillator to be inserted into the heart that can recognize abnormal rhythms and restore the heart to its regular pattern before a heart attack can happen.Pullman said the award recognizes work that began two decades ago.Hodgkinson was working with families in Newfoundland and Labrador, collecting their blood samples and family stories, when she learned that similar research had already begun. Researchers from Texas had visited the province and left with blood samples and personal medical information, but never reported back with their findings.Pullman, a medical ethics professor, came on board to tackle the ethical oversight aspect of the project. He helped create unique legislation in Newfoundland and Labrador that requires all medical research done in the province to be reviewed locally.“It was a major issue for us in Newfoundland. Researchers were coming from outside the province, taking valuable information with them, but not sharing it with local people,” said Pullman.The Memorial University findings are being shared with medical practitioners in other parts of the world where the cause of ARVC has long baffled families and physicians.Pullman says there are still more pieces of the puzzle to figure out. For example, it’s still unknown why women are less severely affected than men, despite carrying the same genetic mutation.But Pullman is hopeful that further research will uncover more of the science behind this longstanding medical mystery, and lead to more lives saved.“You hear a story about a single vehicle accident on a nice clear summer day, a car went off the road for no apparent reason, and the driver’s dead, and I immediately wonder, ‘I wonder if that’s ARVC, that’s some person who has this condition,’” said Pullman.“So there’s still work to be done.”last_img read more

Nobel winner Suu Kyi not above reproach in Rohingya abuse investigations Rae

first_imgOTTAWA – No Myanmar politician, including Nobel laureate and honorary Canadian citizen Aung San Suu Kyi, is above a potential investigation by the International Criminal Court of possible war crimes, says Canada’s special envoy to the crisis.Bob Rae, who was appointed Canada’s special envoy to the seven-month-old Rohingya crisis, offered that warning as he released his final report Tuesday on the troubles engulfing Myanmar and Bangladesh.He said Canada needs to step up its spending on the mass migration crisis and should play a leading role in the investigation by the International Criminal Court of possible war crimes.Canada should also consider granting refugee and resettlement status to Myanmar’s persecuted ethnic Rohingya, 700,000 of whom have fled to neighbouring Bangladesh to escape a brutal campaign by Myanmar’s military, he said.The Trudeau government said it would assess the recommendations and respond later.The 39-page report was noticeably silent on another major issue: how to address Suu Kyi, Myanmar’s de facto political leader who has been widely criticized for not speaking out against the atrocities being committed against the Rohingya.Rae told a news conference on Parliament Hill that he wishes she would act.“Whoever is found responsible, whether in the civilian government or the military government, for what has happened should be held responsible. I don’t exclude anybody from that,” he said.Rae reiterated the past view of the Liberal government — that Suu Kyi is not in charge of her country’s powerful military, which once held her under house arrest and that targeting her does not address the main crisis.“I wish that she had spoken out. I wish she would speak out,” Rae said, adding that his report urges Myanmar’s government, which includes her, to take responsibility for what has happened and allow an independent investigation.The veteran politician made two trips to Myanmar in recent months and described what he essentially characterized as a slow march towards genocide.The Canadian government and others have referred to the crisis as ethnic cleansing, because branding it a genocide would carry an international legal obligation to intervene, potentially with force.Rae recommends Canada take a lead role with like-minded countries in a UN genocide investigation.He also invokes the UN’s Responsibility to Protect doctrine, which Canada helped create more than a decade ago, a doctrine that has been widely criticized for its failure to stop carnage elsewhere — notably Syria.The duty to protect citizens lies initially with states themselves “but failing that, becomes a wider regional and, ultimately, international obligation,” Rae writes.“The lesson of history is that genocide is not an event like a bolt of lightning. It is a process, one that starts with hate speech and the politics of exclusion, then moves to legal discrimination, then the policies of removal and then finally to a sustained drive to physical extermination.”Fareed Khan, spokesman for the Rohingya Human Rights Network, said in a statement that the report is far from perfect but he praised Rae for raising the possibility of a genocide in progress. He called the report “a solid foundation on which Canada can base its long-term approach to addressing the crisis, including bringing to justice Myanmar leaders who have committed crimes against humanity and genocide.”Rae said at the news conference he wasn’t interested in an academic debate about whether genocide is occurring, but said the current crises “has very disturbing echoes of what has happened elsewhere in history, and we need to listen to those echoes.”In the meantime, Rae says Canada needs to do more help refugees, including those in the region and those who might be able to find sanctuary elsewhere, and it needs to commit to a longer-term humanitarian strategy for the region, as it has in Syria and Iraq. Canada also needs to deepen its commitment to human rights on the ground, by protecting women and girls.Aid agencies and rights groups welcomed the report because it showed the government specific areas where Canada can lead.David Morley, president of UNICEF Canada said hundreds of thousands of children are at risk and they must be educated because “educating children in times of crises is key to helping them contribute to peace.”Alex Neve, the secretary general of Amnesty International Canada, said Canada was well-positioned to aid in the ongoing humanitarian relief efforts and “to establish mechanisms to ensure justice and accountability for perpetrators of crimes against humanity.”The report also suggests the federal government could target more of Myanmar’s military leaders under its new Magnitsky Act that seeks to isolate human rights abusers by freezing assets and blocking travel.But Rae stopped short of recommending further sanctions, saying those would only hurt the 50 million people of an already impoverished country, and make Canada irrelevant to any solutions.last_img read more