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Innovations in research and treatment for rare diseases

Innovations in research and treatment for rare diseases

Washington Post18-02-2025
More than 30 million people in the United States are affected by rare diseases, many of which are life-threatening conditions without available treatments. On Thursday, Feb. 27, join Post Live for conversations about the latest efforts to advance medical research, the possibilities spurred by AI and the critical role of caregivers.
Boomer Esiason
Co-Chair, Boomer Esiason Foundation
Former NFL Player
Marshall Summar
CEO, Uncommon Cures
The following content is produced and paid for by a Washington Post Live event sponsor. The Washington Post newsroom is not involved in the production of this content.
Julie Flygare
President & CEO, Project Sleep
Cate McCanless
Chief Corporate Affairs Officer, Harmony Biosciences
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NYC shooting would never have happened if mental illness were handled properly
NYC shooting would never have happened if mental illness were handled properly

New York Post

time2 days ago

  • New York Post

NYC shooting would never have happened if mental illness were handled properly

If New York is to be the stage for mad people to commit their spectacle acts of violence, then we need to talk seriously about mental-health reform. The Nevada gunman who opened fire in midtown Manhattan last week, killing a police officer and three others, should never have made it to New York. A competent mental-health system would have stopped him years ago and 2,000 miles away. The 27-year-old shooter had been hospitalized involuntarily twice in Nevada, first in 2022, at the age when serious mental illnesses tend to manifest, and again in 2024. In between those short-term holds, he had police encounters, including an arrest for criminal trespassing and exhibited troubling behavior like driving unregistered cars. Just a month before the shooting, in June, a tip was reportedly called in that he had bought excessive amounts of ammunition at a gun show and an aftermarket trigger, a gun piece designed to give a shooter better control and accuracy. In a rambling suicide note blaming the NFL, the shooter believed he had chronic traumatic encephalopathy, though reports of his history of any concussions are mixed. The NYPD found antipsychotic medication prescribed to him in his car. His violent behavior, which antipsychotics effectively reduce, suggests he hadn't been taking them. All this suggests a young man experiencing signs of early psychosis and who had deteriorated enough to draw the attention of government systems. As is all too typical with these cases, though, there appears to have been no supervision or oversight, no mandated treatment and no long-term hospitalization. The shooter's deterioration, from his first involuntary commitment to his purchase of ammunition and firearms, all happened in Nevada. So did his release — twice — from holds that should have promoted more sustained interventions. Nevada ranks 43rd in the nation for inpatient psychiatric bed capacity. With so few beds, hospitals can only admit so many patients, which means some patients won't be committed, even when that's precisely what they and the community need. Short-term stays of 72 hours or less fix little. They don't set up a care structure around a person to facilitate stability. Upon discharge, there's no guarantee of treatment compliance, especially in a state where court-ordered outpatient care is rarely used. Some have asked how the shooter, with a mental-health history, was able to get hold of a gun. But gun laws are only as good as the mental-health records that inform them. And if a mental-health system fails to intervene forcefully enough, scant service records will ever be generated. A mass shooting requires a greater degree of organization than a subway pushing. But like the subway violence New Yorkers have become tragically accustomed to, the Midtown shooter's victims were strangers to him, and he was known to the system, which failed him and the public. Those mental-health systems failures were Nevada's, not New York's. But the shooting tragedy provides lessons relevant to the debate here. First, untreated serious mental illness, though more visible in New York City, is a national problem. If New York continues to strike the fancy of ambitious murderers looking for the largest stage on which to perpetuate their atrocities, New York has a uniquely large stake in national mental-health reform. President Donald Trump's recent executive order on homelessness called for more use of civil commitment nationwide. Progressives blanch at that, but it's what will be needed if we're to make headway in reducing mental illness-related violence. Second, in the case of most such violence, the problem isn't stigma or insufficient public empathy for the mentally disabled. It's insufficient engagement with those who are most sick and most at risk, many of whom don't believe they are sick at all. Third, while asking mental-health systems to stop all violence somehow related to untreated psychosis is unrealistic, asking them to help reduce the risk is, or should be, a core responsibility. But systems tend to go about that task in completely the wrong way. Too many taxpayer-funded mental-health programs claim to prevent mental illness but do so by conducting mass screenings of the population for general distress. Examples include Mental Health First Aid and school-based programs, which have expanded dramatically since COVID. When everyone is marked for concern, the system floods with noise, making true signals of danger harder to recognize. A more effective mental-health system would be both smaller and larger than the one we have now. It would be more ambitious and certainly involve the robust participation of the national government. But it would be more focused on the hardest cases. Stephen Eide is a senior fellow at the Manhattan Institute and a contributing editor of City Journal. Carolyn D. Gorman is a Paulson Policy Analyst at the Manhattan Institute.

Saquon Barkley among NFL stars who will join President Trump's council on Sports Nutrition
Saquon Barkley among NFL stars who will join President Trump's council on Sports Nutrition

USA Today

time3 days ago

  • USA Today

Saquon Barkley among NFL stars who will join President Trump's council on Sports Nutrition

Eagles running back Saquon Barkley will join Harrison Butker, Nick Bosa, Tony Romo, and Lawrence Taylor on President Trumps Council on Sports, Fitness, and Nutrition.' Saquon Barkley is a son, a fantastic father, the NFL's Offensive Player of the Year winner, and now a member of President Donald Trump's administration. In a move that will revive a standard from the Reagan, Clinton, and Bush era, Barkley will join Harrison Butker, Nick Bosa, Tony Romo, and Lawrence Taylor on President Trump's Council on Sports, Fitness, and Nutrition.' According to the Washington Post, President Trump on Thursday announced that the presidential fitness test, a hallmark of American physical education programs, will be making a comeback in public schools. The assessment was retired and replaced by a fitness program under the Obama administration. The presidential fitness test was initiated in the 1950s by a council established by President Dwight D. Eisenhower that was directed to improve the physical fitness of American youths, in response to fears they were falling behind their European counterparts when it came to athleticism. The project is an alternative way to get anti-obesity drugs to Medicare and Medicaid patients, after the administration said in April that neither program would cover GLP-1s for weight loss. In doing so, it scrapped a 2024 Biden administration proposal for the programs to start covering GLP-1s for patients with obesity. Several high-profile athletes — all of whom have existing ties to Trump — attended the ceremony and will serve on the President's Council on Sports, Fitness and Nutrition. The attendees included professional golfer Bryson DeChambeau, who will chair the council; controversial National Football League kicker Harrison Butker; World Wrestling Entertainment mainstay Paul 'Triple H' Levesque; golfer Annika Sorenstam; and football Hall of Famer Lawrence Taylor. The Eagles running back wasn't in attendance, but will be joined by golfers Jack Nicklaus, Nelly Korda, and Gary Player (who was also awarded the Medal of Freedom alongside Sorenstam); Tony Romo, Nick Bosa, and Barkley; legendary hockey player Wayne Gretzky; and baseball player Mariano Rivera. The list also includes NFL Commissioner Roger Goodell, whom Trump repeatedly scrutinized during his first presidential term. Barkley was criticized during the off-season for spending time with President Trump on a golf outing prior to the Eagles' ring celebration.

NYC shooter Shane Tamura's brain will be tested for CTE, medical examiner's office says
NYC shooter Shane Tamura's brain will be tested for CTE, medical examiner's office says

USA Today

time5 days ago

  • USA Today

NYC shooter Shane Tamura's brain will be tested for CTE, medical examiner's office says

The brain of Shane Tamura, the 27-year-old gunman who killed four in a mass shooting Monday at the Manhattan building housing the NFL's offices before dying by suicide, will be tested for chronic traumatic encephalopathy (CTE), according to the city's medical examiner's office. A spokesperson for New York City's Office of Chief Medical Examiner told USA TODAY Sports it would be testing for the disease as part of a full neurological work-up of the deceased. "Our office has neuropathology expertise in house and will be examining the brain as part of the additional testing for the complete autopsy," a spokesperson wrote in an email. The story was first reported by The Washington Post. The medical examiner's tests come after Tamura asked in a three-page note, found in his wallet after the shooting, to be tested for CTE, which is a brain condition experienced by people who have repeated blows to the head, often through contact sports such as football. Tamura claimed his time playing high school football in California caused him to develop CTE. He also wrote in his note the NFL "knowingly concealed the dangers to our brains to maximize profits. They failed us." CTE can result in a variety of symptoms, including increased aggression, emotional instability and suicidal thoughts and behavior, according to the Mayo Clinic. It can only be diagnosed posthumously. As of 2023, the Boston University CTE Center had tested 376 former NFL players for the disease. It found 345 of them (91.7%) suffered from CTE. However, an article revealing that data noted the prevalence among all NFL athletes is unknown because it can only be diagnosed after death and "brain bank samples are subject to selection biases." "While the most tragic outcomes in individuals with CTE grab headlines, we want to remind people at risk for CTE that those experiences are in the minority,' said Dr. Ann McKee, then the director of the BU CTE Center and chief of neuropathology at VA Boston Healthcare System. "Your symptoms, whether or not they are related to CTE, likely can be treated, and you should seek medical care. Our clinical team has had success treating former football players with mid-life mental health and other symptoms." Chris Nowinski – the CEO of the Concussion Legacy Foundation, which works closely with the Boston University CTE center – cautioned The Washington Post that even if Tamura is diagnosed with CTE, it wouldn't rule out other factors from having contributed to his actions. Those potential factors include mental illness, genetic disorders and drug use.

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