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Amylyx said Friday it would discuss its plans for Relyvrio with patients and the FDA, which “may include voluntarily withdrawing” the drug. The latest company study showed that the drug did not slow the disease compared with a dummy treatment. Amylyx’s medication is part of a string of drugs for deadly, degenerative diseases that have won FDA approval in recent years despite questionable proof that they work. That commitment seemed to reassure FDA's advisers who voted in favor of the drug's approval, despite the questionable data. In the months before the decision the FDA faced intense pressure from ALS patients, advocates and members of Congress.

Persons: Lou Gehrig’s, Amylyx, ”, “, Relyvrio Organizations: WASHINGTON, Drug Administration, Amylyx Pharmaceuticals, Relyvrio, FDA, Cambridge, Amylyx Pharmaceuticals Inc, Associated Press Health, Science Department, Howard Hughes Medical Institute’s Science, Educational Media Group, AP Locations: U.S

Washington CNN —President Joe Biden is fit for duty, his doctor reported Wednesday following the president’s annual physical, in what is expected to be the last update on Biden’s health before November’s election. Dr. Kevin O’Connor said in a memo there are “no new concerns” with the president’s health revealed by this year’s physical. The White House said earlier Wednesday that no cognitive test was administered as O’Connor did not find it necessary. The procedure was “successfully completed” at the White House by a team from Walter Reed, O’Connor said. Reports from the White House physician over the last several decades have consistently described the office-holder as fit to serve.

Persons: Joe Biden, Kevin O’Connor, ” O’Connor, Biden, ”, SSRS, Karine Jean, Pierre, “ doesn’t, Donald Trump, Jonathan Reiner, ” Reiner, that’s, O’Connor, “, Biden’s, ” Biden, Lou Gehrig’s, Robert Hur, I’ve, –, seething Biden, “ I’ve, NBC’s, Seth Meyers, ” Wednesday’s Walter Reed, Walter Reed, CNN’s Kevin Liptak, Mira Cheng Organizations: Washington CNN, O’Connor, “, State, CNN, Quinnipiac University, White, US Preventive Services, Force, Medical Unit, American Medical Association, National Institutes of Health, White House Locations: Beverly Hills , California, United States

Without ever clicking a mouse or touching a screen, Mark selected this command on his computer simply using signals from his brain. “I figured I had two choices: I could wallow in self-pity, or I could pick myself up by the bootstraps and do what I could to help,” Mark said. Synchron’s brain implant, the one Mark has, is called a Stentrode and consists of a stent with electrode sensors that can detect electrical brain activity. That external transmitter sits right above the internal transmitter and carries the signal from Mark’s brain to the computer almost instantaneously. Earlier this month, Musk also said Neuralink’s first human trial participant can control a computer mouse with their brain.

Persons: Sanjay Gupta’s, Erin Burnett OutFront, CNN —, Mark, Lou Gehrig’s, ” Mark, Elon Musk, ”, “, Sanjay Gupta, Synchron, Tom Oxley, hardwired, he’s, Mark didn’t, “ We’d, Maria Nardozzi, ” Oxley, CNN Mark, Musk’s Neuralink, Oxley, António Guterres, ” Elon Musk, Gonzalo Fuentes, Neuralink, Musk, Hope Organizations: CNN, BCI, US Food and Drug Administration, Netflix, US Securities and Exchange Commission, United Nations, Reuters, SpaceX Locations: Neuralink, UNESCO’s, Pennsylvania

NEW YORK (AP) — According to Elon Musk, the first human received an implant from his computer-brain interface company Neuralink over the weekend. Neuralink reposted Musk's Monday post on X, but did not publish any additional statements acknowledging the human implant. In its September announcement, Neuralink said the wires would be surgically placed in a region of the brain that controls movement intention. The initial goal of the so-called brain computer interface is to give people the ability to control a computer cursor or keyboard using their thoughts alone. There are more than 40 brain computer interface trials underway, according to clinicaltrials.gov.

Persons: Elon Musk, Musk, Neuralink, Gehrig’s Disease, ___ Laura Ungar Organizations: Twitter, Associated Press, Drug Administration Locations: Columbia , Missouri

☆ Hochul to Propose $25 Million in State Funding for A.L.S. Research
▼ + stars: | 2024-01-15 | by ( Claire Fahy | ) www.nytimes.com time to read: +1 min

Kathy Hochul is set to propose an appropriation on Tuesday that would provide one of the largest sums ever invested by a state into research of amyotrophic lateral sclerosis, the neurodegenerative disease known as A.L.S. The appropriation, part of Ms. Hochul’s overall budget proposal, would commit $25 million to A.L.S. The governor said she hoped the program could serve as an outline for tackling other rare diseases as well. Ms. Hochul’s mother, Patricia Courtney, died from A.L.S., also known as Lou Gehrig’s disease, in 2014. She never saw her daughter become lieutenant governor or governor.

Persons: Kathy Hochul, Hochul’s, Patricia Courtney, Lou Gehrig’s, Hochul, ” Organizations: State Assembly Locations: A.L.S, State

☆ Chris Snow, Calgary Flames executive, dead at 42 following battle with ALS
▼ + stars: | 2023-10-01 | by ( Homero De La Fuente | ) edition.cnn.com time to read: +3 min

CNN —Calgary Flames assistant general manager Chris Snow died on Saturday following his battle with ALS, his wife Kelsie Snow announced. “The National Hockey League family is deeply saddened by the passing of Calgary Flames Assistant General Manager Chris Snow, a remarkable man whose courageous and relentless battle with ALS has been an inspiration to so many,” NHL commissioner Gary Bettman said in a statement. Prior to his time with the Flames, Snow was a sports reporter for the Boston Globe, where he covered the Boston Red Sox, and the Minneapolis Star-Tribune, where he covered the Minnesota Wild. Following his time as a journalist, Snow worked as a director of hockey operations for the Wild from 2006 through 2010. He is survived by his wife Kelsie, his son Cohen, and his daughter Willa.

Persons: Chris Snow, Kelsie Snow, Chris, ” Snow, Lou Gehrig’s, “ Chris, Craig Conroy, Kelsie, Cohen, Willa, ”, Gary Bettman, Snow Organizations: CNN — Calgary Flames, ALS, Flames, ” Flames, National Hockey League, Calgary Flames, NHL, Club’s Hockey, Boston Globe, Boston Red Sox, Minneapolis Star, Tribune Locations: Minnesota

Those advocates still face one giant hurdle: FDA regulators say the treatment hasn't been shown to work. But with the backing of thousands of ALS patients, Brainstorm took the rare step of “filing over protest,” essentially forcing the agency to render a decision. Still, ALS patients see reasons for optimism. At Wednesday’s meeting, people with such reservations are certain to be outnumbered by appeals from ALS patients and their families. That compromise would be similar to FDA's approach to Relyvrio last year, another ALS drug with questionable data.

Persons: Lou Gehrig’s, drugmaker, they’re, ”, Marc Scheineson, Brian Wallach, Wallach, “, Brainstorm’s, NurOwn, Patricia Manhardt, Anthony Windebank, reanalyzing, weren’t, Terry Heiman, Patterson, it’s, Holly Fernandez Lynch, Matthew Perrone Organizations: WASHINGTON, Drug Administration, FDA, drugmakers, Congress, Obama White House, ALS Association, Mayo Clinic, Physicians, Temple University, University of Pennsylvania, Twitter, Associated Press Health, Science Department, Howard Hughes Medical Institute’s Science, Educational Media Group, AP

☆ Born of Grief, a Couple’s Off Broadway Incubator Marks 20 Years
▼ + stars: | 2023-05-08 | by ( Robin Pogrebin | ) www.nytimes.com time to read: +1 min

In 2002, Jenny and Jon Steingart founded the Off Broadway incubator Ars Nova as a way of honoring Jenny’s brother, Gabriel Wiener, who in 1997 died of a brain aneurysm at the age of 26. Now, as the nonprofit theater is marking its 20th anniversary, the couple is facing another wrenching struggle: Jon has A.L.S., the severe neurological disorder also known as Lou Gehrig’s disease. “Every painful experience in my life — if I have to live through it, I am going to come out on the other side with a lesson and a way to give back in some way,” Jenny Steingart said in a recent interview at their home on the Upper West Side. “Because a loss without some meaning behind it is really hard to live with.”So this anniversary, to be celebrated with a gala on Monday, also finds the Steingarts feeling great satisfaction, having created an institution that — in the wake of the 9/11 attacks — has played a crucial role in the professional development of so many artists. Among those who have worked at Ars Nova are Lin-Manuel Miranda, Thomas Kail, Christopher Jackson and Phillipa Soo of “Hamilton” fame; Bridget Everett, the actress and cabaret performer of the acclaimed HBO series “Somebody Somewhere”; and Dave Malloy, who created “Natasha, Pierre & the Great Comet of 1812” at Ars Nova.

☆ A new test for autism hopes to help doctors diagnose before symptoms show
▼ + stars: | 2023-01-05 | by ( Evan Bush | Evan Bush Is A Science Reporter For Nbc News. He Can Be Reached At Evan.Bush Nbcuni.Com. | ) www.nbcnews.com time to read: +8 min

Researchers have discovered myriad risk factors associated with autism, including infections during pregnancy, air pollution and maternal stress. “We can detect the clear rhythm of autism with just about one centimeter of hair,” Arora said. Autism diagnosis timingArora and his team hope their technology could help young children, even newborns, receive early interventions for autism sooner than they can now. “We want to enable early intervention.”There is not yet a biological test for autism spectrum disorder. Perhaps eventually, that information could open up new pathways for the development of drugs or therapies for autism, he said.

☆ Final farewell: From Sidney Poitier to Pope Emeritus Benedict a look back at the influential figures who died in 2022
▼ + stars: | 2023-01-01 | by ( Associated Press | ) www.nbcnews.com time to read: +55 min

Other world leaders who died in 2022 include former Soviet leader Mikhail Gorbachev, who died in August. The final days of 2022 saw the loss of some exceptionally notable figures, including Pope Emeritus Benedict XVI. Here is a roll call of some influential figures who died in 2022 (cause of death cited for younger people, if available):___JANUARY___Dan Reeves, 77. A Cuban-born artist whose radiant color palette and geometric paintings were overlooked for decades before the art world took notice. A prolific character actor best known for playing villains and tough guys in “The Manchurian Candidate,” “Ocean’s Eleven” and other films.

☆ Police officers to receive Congressional Gold Medals for Jan. 6
▼ + stars: | 2022-12-06 | by ( Associated Press | ) www.nbcnews.com time to read: +5 min

To recognize the hundreds of officers who were at the Capitol on Jan. 6, the medals will be placed in four locations — at U.S. Capitol Police headquarters, the Metropolitan Police Department, the Capitol and the Smithsonian Institution. Awarding the medals will be among House Speaker Nancy Pelosi’s last ceremonial acts as she prepares to step down from leadership. Officers suffered physical wounds, including brain injuries and other lifelong effects, and many struggled to work afterward because they were so traumatized. Two police officers died by suicide in the days that immediately followed, and a third officer, Capitol Police Officer Brian Sicknick, collapsed and later died after one of the rioters sprayed him with a chemical. The Congressional Gold Medal, the highest honor Congress can bestow, has been handed out by the legislative branch since 1776.

☆ Roberta Flack has ALS, now ‘impossible to sing,’ rep says
▼ + stars: | 2022-11-14 | by ( Associated Press | ) www.nbcnews.com time to read: +3 min

A representative for Roberta Flack announced Monday that the Grammy-winning musician has ALS, commonly known as Lou Gehrig’s disease, and can no longer sing. The progressive disease “has made it impossible to sing and not easy to speak,” Flack’s manager Suzanne Koga said in a release. Flack also plans to publish a children’s book co-written with Tonya Bolden, “The Green Piano: How Little Me Found Music,” that month. Flack had a stroke in 2016 and spoke to The Associated Press a little over two years later about returning to performing. “I could sing any number of songs that I’ve recorded through the years, easily, I could sing them, but I’m going to pick those songs that move me,” Flack said.

☆ Roberta Flack can no longer sing after ALS diagnosis
▼ + stars: | 2022-11-14 | by ( Story Reuters | ) edition.cnn.com time to read: +1 min

Grammy-winning musician Roberta Flack, whose hits include “Killing Me Softly with His Song,” has been diagnosed with ALS, also known as Lou Gehrig’s disease, and can no longer sing, her representatives said on Monday. Amyotrophic lateral sclerosis, a progressive disease, “has made it impossible to sing and not easy to speak,” a statement from her publicists said. “But it will take a lot more than ALS to silence this icon.”A documentary about Flack’s life is set to debut at a film festival in New York next week. Flack, 85, also is releasing a children’s book in January. ALS breaks down nerve cells in the brain and spinal cord that make muscles work, leading to progressive paralysis and death.

☆ Sam Shields: Super Bowl champion regrets playing in NFL; says his head is 'all mushed together' with concussions
▼ + stars: | 2022-11-03 | by ( Ben Morse | ) edition.cnn.com time to read: +7 min

CNN —Former Green Bay Packers cornerback Sam Shields has said he regrets playing in the NFL, pointing to the effects concussions and head injuries had on his career and his later life. The spotters “serve as another set of eyes, watching for possible injuries at every NFL game,” according to NFL Football Operations. Concussions and their prevention have become an important issue in recent years due to their connection to brain disease later in life. The neurodegenerative brain disease can be found in individuals who have been exposed to repeated head trauma. The researchers hypothesized about a relationship between head trauma and ALS because of a similar link detected between football and the neurodegenerative disease CTE.

☆ Fetterman Oz debate for Pennsylvania Senate seat sends message to stroke survivors
▼ + stars: | 2022-10-25 | by ( Judith Hannah Weiss | Judith Hannah Weiss Is A Freelance Writer Whose Work Has Appeared In The Iowa Review | The Rumpus | ) www.nbcnews.com time to read: +7 min

John Fetterman suffered days before winning the Democratic Senate nomination in May. The stroke added a new wrinkle to a race that could determine which party takes control of the 50-50 U.S. Senate. The Oz campaign is clearly hoping that perception will hurt Fetterman. In one egregious example, Oz issued a list of “concessions” for their debate Tuesday night that many see as mocking. Benjamin Abella, a professor of emergency medicine at the University of Pennsylvania, criticized the Oz campaign for shaming a stroke survivor.

☆ Why a $158,000 Drug With Unclear Benefits Hurts Whole Health System
▼ + stars: | 2022-10-10 | by ( David Wainer | ) www.wsj.com time to read: 1 min

Like many patients suffering from amyotrophic lateral sclerosis, or ALS—also known as Lou Gehrig’s disease—Layne Oliff didn’t have any time to waste. Even before the drug Relyvrio was approved late last month by the Food and Drug Administration, he has had his own do-it-yourself method: he gets sodium phenylbutyrate in liquid form from a New Jersey pharmacy and taurursodiol online from Amazon. That costs him over $7,000 a year, but he says it has been well worth it because he feels the combination has helped stabilize a disease that often causes death within a few years.

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