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☆ Rob Burrow, Rugby Star and A.L.S. Campaigner, Dies at 41
▼ + stars: | 2024-06-04 | by ( Alex Williams | ) www.nytimes.com time to read: +1 min

Rob Burrow, a rugby standout who overcame his diminutive stature with fleetness and ferocity to become an eight-time champion of Britain’s Super League and who was later hailed for raising awareness of motor neuron disease after being diagnosed with it in 2019, died on Sunday. His death — from M.N.D., a group of neurological disorders that includes amyotrophic lateral sclerosis, or A.L.S., also known as Lou Gehrig’s disease — was announced by the Leeds Rhinos, the British club with which he spent his entire 17-year professional career. It did not say where he died. Doubted at every turn for his small stature — he was about 5-foot-5 and 150 pounds — Burrow nevertheless became a star, earning nicknames like Mighty Atom and Pocket Rocket in the British tabloids. He was sapped of his physical gifts, however, when he was diagnosed with his neurological disorder at 37, just two years after his retirement in 2017.

Persons: Rob Burrow, Lou Gehrig’s, —, Burrow Organizations: Britain’s Super League, Leeds Rhinos Locations: M.N.D, British

☆ David Redden, Who Brought Ingenuity to the Auction Block, Dies at 75
▼ + stars: | 2024-05-21 | by ( Trip Gabriel | ) www.nytimes.com time to read: +1 min

One hundred seventy-five cookie jars that belonged to Andy Warhol. The bat that Babe Ruth carried in his last appearance at Yankee Stadium. A piano plinked by Dooley Wilson, as Sam, in “Casablanca.” The Duchess of Windsor’s jewelry. David N. Redden, an innovative auctioneer and a dapper presence at the podium, sold them all in a 42-year career at Sotheby’s. His wife, Jeannette Redden, said the cause was complications of amyotrophic lateral sclerosis, or A.L.S., which he had for nine years.

Persons: Andy Warhol, Babe Ruth, Dooley Wilson, Sam, David N, Redden, James Naismith’s, —, Jeannette Redden Organizations: Yankee, Sotheby’s, Magna Carta, brac Locations: “ Casablanca, ”, Independence, Cornwall, Hudson, N.Y

☆ A.L.S. Drug Relyvrio Will Be Taken Off the Market, Its Maker Says
▼ + stars: | 2024-04-04 | by ( Pam Belluck | ) www.nytimes.com time to read: +1 min

The maker of the newest treatment approved for amyotrophic lateral sclerosis said Thursday that it would withdraw the drug from the market because a large clinical trial did not produce evidence that the treatment worked. The company, Amylyx Pharmaceuticals, said in a statement that it had started the process of withdrawing the drug in the United States, where it is called Relyvrio, and in Canada, where it is called Albrioza. As of Thursday, no new patients will be able to start the drug, while current patients who wish to continue taking the medication can be transitioned to a free drug program, the company said. It decided to greenlight the medication anyway, instead of waiting two years for results of a large clinical trial, citing data showing the treatment to be safe and the desperation of A.L.S. The disease robs patients of their ability to control muscles, speak and breathe without assistance and often causes death in two to five years.

Organizations: Amylyx Pharmaceuticals, and Drug Administration Locations: United States, Canada

☆ A.L.S. Drug Relyvrio Fails Clinical Trial and May Be Withdrawn From the Market
▼ + stars: | 2024-03-08 | by ( Pam Belluck | ) www.nytimes.com time to read: +1 min

One of the few treatments the Food and Drug Administration has approved for amyotrophic lateral sclerosis has failed a large clinical trial, and its manufacturer said Friday that it was considering whether to withdraw it from the market. The medication, called Relyvrio, was approved less than two years ago, despite questions about its effectiveness in treating the severe neurological disorder. At the time, the F.D.A.’s reviewers had concluded there was not yet sufficient evidence that the medication could help patients live longer or slow the rate at which they lose functions like muscle control, speaking or breathing without assistance. But the agency decided to greenlight the medication instead of waiting two years for results of a large clinical trial, citing data showing the treatment to be safe and the desperation of patients with a disease that often causes death within two to five years. Now, results of the 48-week trial of 664 patients are in, and they showed that the treatment did not work better than a placebo.

Persons: ’ Organizations: and Drug Administration Locations: United States

☆ Kenneth Mitchell, Known for ‘Star Trek’ and ‘Captain Marvel’ Roles, Dies at 49
▼ + stars: | 2024-02-25 | by ( Livia Albeck-Ripka | More About Livia Albeck-Ripka | ) www.nytimes.com time to read: 1 min

Kenneth Mitchell, a Canadian actor known for his roles on the series “Star Trek: Discovery” and the film “Captain Marvel,” died on Saturday. He had lived with the neurological disorder amyotrophic lateral sclerosis, or A.L.S., which causes paralysis and death, for more than five years, according to a statement from Mr. Mitchell’s family posted to his social media. Mr. Mitchell played the Klingons Kol, Kol-Sha, and Tenavik, as well as Aurellio, on “Star Trek: Discovery,” and voiced several other characters in an episode of “Star Trek: Lower Decks.”In “Captain Marvel,” he played the father of the superhero, Carol Danvers. He was also known for portraying Eric Green on the series “Jericho,” Joshua Dodd in the series “Nancy Drew,” a hockey player in the film “Miracle,” and appeared in several other film and television series.

Persons: Kenneth Mitchell, Marvel, ”, Mitchell’s, Mitchell, Kol, Captain Marvel, Carol Danvers, Eric Green, ” Joshua Dodd, Nancy Drew Organizations: “ Locations: Canadian

☆ 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

☆ Ady Barkan, Health Care Activist, Dies at 39
▼ + stars: | 2023-11-02 | by ( Mike Ives | More About Mike Ives | ) www.nytimes.com time to read: +1 min

Like so many of you, I have experienced the ways our health care system is fundamentally broken: enormous costs, denied claims, dehumanizing treatment when we are most in need. Today we are witnessing the tragic consequences of our failing health care system. Everyone living in America should get the health care they need, regardless of their employment status or ability to pay. Even during this terrible crisis, Donald Trump and Republican politicians are trying to take away millions of people’s health insurance. And then, with a compassionate and intelligent president, we must act together and put on his desk a bill that guarantees us all the health care we deserve.

Persons: Ady Barkan, Donald Trump, —, Joe Biden Organizations: Republican Locations: America

Guilhem Gallart used to speak with a thick, southern French accent, his voice deep and slightly nasal, topped by a faint lisp. Now, his family jokes with him that he sounds like a GPS device. His wife and two daughters, Mr. Gallart said, sometimes call his old cellphone number just to hear his voice mail greeting. Losing his distinctive voice, he said, has felt like surrendering an essential part of himself, as sound has been his life’s passion. Better known as Pone, he is a music producer and beatmaker who once belonged to one of France’s most popular old-school rap groups, the Fonky Family.

Persons: Guilhem Gallart, Gallart, beatmaker

☆ 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.

☆ F.D.A. Approves Drug for Rare Form of A.L.S.
▼ + stars: | 2023-04-25 | by ( Rebecca Robbins | ) www.nytimes.com time to read: +1 min

Biogen will be required to provide confirmatory evidence, from ongoing clinical research, to keep the drug on the market. The decision is the first conditional approval granted for a medication for A.L.S., or amyotrophic lateral sclerosis, which generally causes paralysis and death within a few years. The approval is based on evidence that the drug can significantly reduce levels of a protein that has been linked to damage to nerve cells. Despite the uncertainty about its benefit, Qalsody’s approval is widely seen as more justifiable than that of Aduhelm, another drug from Biogen. unanimously recommended that the agency grant conditional approval of Qalsody, even though a majority of advisers concluded that there was not convincing evidence that it was effective.

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