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☆ Joe Bonsall, a 50-year member of The Oak Ridge Boys, dead at 76
▼ + stars: | 2024-07-09 | by ( Lisa Respers France | ) edition.cnn.com time to read: +3 min

CNN —Joe Bonsall, who left the legendary singing group The Oak Ridge Boys after 50 years in January due to a neuromuscular disorder, has died, his management team announced Tuesday. Bonsall died from complications of Amyotrophic Lateral Sclerosis (ALS), according to his representatives. Bonsall announced on social media about six months ago that he was leaving the group. “Many of you know I have been battling a slow onset (over 4 years now) of a neuromuscular disorder,” he wrote. During his long career, Bonsall became a member of the Grand Ole Opry and was inducted into the Philadelphia Music Hall of Fame, the Gospel Music Hall of Fame, the Vocal Group Hall of Fame, and the Country Music Hall of Fame.

Persons: Joe Bonsall, Bonsall, ”, “, ” Bonsall, ” “, Ben James, Duane Allen, William Lee Golden, Richard Sterban, Rick Diamond, “ Elvira ”, “ Joe, Jesus, Mary Ann, Jennifer, Sabrina, Breanne, Luke, Chance, Nancy Organizations: CNN, Boys, Grand Ole Opry, Philadelphia Music Hall of Fame, Gospel Music Hall of Fame, Vocal Group Hall of Fame, Country Music Hall of Fame, Philadelphia Phillies, ALS Association, Vanderbilt Medical Center, Neuroscience Research Locations: Tennessee

The Dells contributed nearly $976 million to their charitable funds, which distribute gifts to a wide array of charities. Together, the 50 donors on the list contributed a total of $11.9 billion to charity in 2023. Only 23 of the richest Americans on the Forbes 400 list donated enough to appear on the Philanthropy rankings. 13 on the list, they contributed $210 million to the Institute for Protein Innovation, which shares its data with scientists for free. _____Maria Di Mento is a senior reporter and Jim Rendon is a senior writer at the Chronicle of Philanthropy, where you can read the full article.

Persons: Michael Bloomberg, Phil Knight, Penny, Michael Dell, Susan, Bill Gates, Melinda French Gates, Bernie Marcus, Ken Langone, Arthur Blank, “, ”, Renee Kaplan, — Franklin Antonio, Hugh Hoffman, —, Tim Springer, Chafen Lu, Diego’s Jay Kahn, Lauder, Sergey Brin’s, Michael J, Robert Kraft, Lucia Woods, David, Kathleen LaCross, Pierre Omidyar, Pam, They’re, John, Laura Arnold, Laura, ” Laura Arnold, Wendy Schmidt, Eric Schmidt, “ Younger, Kaplan, Jeff Sobrato, _____ Maria Di Mento, Jim Rendon, Kay Dervishi Organizations: New, New York City, Nike, Bloomberg, Knights, University of Oregon, Dells, Forbes, Forward, Qualcomm, Summer Science, SETI Institute, ALS Association , University of Cincinnati Foundation, Cincinnati Zoo, Botanical, Nature Center, Yale University, Institute for Protein Innovation, Price Club, Apple, San Diego Foundation, Discovery Foundation, Google, Fox Foundation, Parkinson’s Research, New England Patriots, Foundation, Combat, Ms, Foundation for Women, Chicago Foundation for Women, University of Virginia Darden School of Business, eBay, District of Columbia, Associated Press, Philanthropy Locations: New York, Portland , Oregon, Ohio, Moderna, California, Florida, Texas, Virginia, Washington, Hawaii, Massachusetts

☆ Meet the 23-year-old who's spreading awareness about ALS on TikTok and openly joking about being in her 'terminally ill era'
▼ + stars: | 2024-01-08 | by ( Kieran Press-Reynolds | ) www.businessinsider.com time to read: +5 min

Amanda Tam is documenting her journey with the disease neurodegenerative ALS on TikTok. Tam's videos often have a comedic bent, and her followers say she's an inspiration. AdvertisementAmanda Tam's TikTok channel is like many other 23-year-olds on the app. But most of Tam's videos also revolve around a much more serious topic: her diagnosis of ALS , also known as Lou Gehrig's disease. "It's important to be a realist and be aware of your situation, but it's equally important to still find joy and hope in life," Tam told BI.

Persons: Amanda Tam, —, Amanda Tam's, Lou Gehrig's, TikToker, Peter Frates, Tam, she's, I've, It's, She's, TikTok Organizations: Service, ALS Association Locations: Quebec

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

☆ FDA staff reviewers raise concerns over BrainStorm Cell's ALS therapy
▼ + stars: | 2023-09-25 | by ( ) www.reuters.com time to read: +2 min

Signage is seen outside of the Food and Drug Administration (FDA) headquarters in White Oak, Maryland, U.S., August 29, 2020. Brainstrom's therapy, NurOwn, is being reviewed for the treatment of ALS, also known as Lou Gehrig's Disease, which affects nerve cells in the brain and spinal cord. The FDA had in November last year refused to accept the application for the therapy after BrainStorm failed to meet the main goal in a late-stage study. Over the last one year, the FDA has given accelerated approvals to Amylyx Pharmaceuticals' (AMLX.O) drug Relyvrio and Biogen's (BIIB.O) Qalsody for treatment of ALS. A panel of external advisors to the FDA is set to vote on the effectiveness of the therapy in ALS patients on Wednesday.

Persons: Andrew Kelly, Lou Gehrig's Disease, Amylyx, Mariam Sunny, Leroy Leo, Krishna Chandra Organizations: Food and Drug Administration, FDA, REUTERS, U.S . Food, Drug, Cell Therapeutics, Amylyx Pharmaceuticals, ALS Association, Thomson Locations: White Oak , Maryland, U.S, Bengaluru

☆ Worker strike at South32's Appin mine extended by a week - trade union
▼ + stars: | 2023-08-22 | by ( ) www.reuters.com time to read: +1 min

A sign adorns the building where Australian miner South32 has their office in Perth, Western Australia, November 19, 2015. REUTERS/David Gray/File Photo Acquire Licensing RightsCompanies South32 Ltd FollowAug 22 (Reuters) - Australian trade union Collieries' Staff and Officials Association (CSOA) on Tuesday said mining supervisors voted to extend their work stoppage at South32's (S32.AX) Appin mine for one more week. The strike, which was due to end on Aug. 25, has been extended till Sept. 1. A South32 spokesperson told Reuters that some parts of the mine, located in New South Wales, will remain non-operational during the strike. Reporting by Himanshi Akhand and Sameer Manekar in Bengaluru; Editing by Varun H KOur Standards: The Thomson Reuters Trust Principles.

Persons: South32, David Gray, Belinda Giblin, Himanshi Akhand, Sameer Manekar, Varun Organizations: REUTERS, Collieries ' Staff, Association, Reuters, Thomson Locations: Perth, Western Australia, New South Wales, Bengaluru

☆ Sandra Bullock's sister mourns death of actress's longtime partner Bryan Randall
▼ + stars: | 2023-08-08 | by ( Lisa Respers France | ) edition.cnn.com time to read: +2 min

CNN —Gesine Bullock-Prado, the sister of Sandra Bullock, paid tribute Monday to the actress’s longtime partner, photographer Bryan Randall. Randall “passed away peacefully” following a private three-year battle with ALS, his family said in a statement to People magazine. “Bryan chose early to keep his journey with ALS private and those of us who cared for him did our best to honor his request,” his family said in their statement. We share two beautiful children – three children, [Randall’s] older daughter,” Bullock said. “It’s the best thing ever.”Bullock is mother to a 13-year-old son, Louis, and a 10-year-old daughter, Laila.

Persons: CNN — Gesine Bullock, Sandra Bullock, Bryan Randall, Randall “, Bullock, Prado, Randall, “ I’m, Bry, Gesine Bullock, Emma McIntyre, ”, Bryan, ” Randall, “ Bryan, ” Bullock, “, Louis, Laila, Skylar Organizations: CNN, Prado, ALS, Los Angeles, Regency Village Theatre, ALS Association, Massachusetts General Hospital Locations: Los Angeles

☆ Column: Germany energy transition faces key chemical sector conundrum
▼ + stars: | 2023-05-31 | by ( Gavin Maguire | Thomson Reuters | Gavin Maguire Is The Global Energy Transition Columnist. He Was Previously Asia Commodities | ) www.reuters.com time to read: +6 min

However, Germany is also home to Europe's largest chemicals sector which churns out plastics, paints, acids and other key inputs that are critical to manufacturers and heavy industries that form the backbone of the German economy. Sharply lower business activity also caused a drop in chemicals consumption last year, but as economic activity recovered in 2023 a lingering shortage of key chemical products has pushed German chemicals prices to near record premiums over those supplied by other producers. DAMAGE DONEThe sustained high prices of German chemical products over international rivals have two important damaging consequences. If the German chemicals sector is to ensure its own long-term future, it must somehow win back any business lost among commodity manufacturers by driving product prices steadily lower relative to rival offerings. On its own, the chemicals sector may struggle to both cut costs and clean up its own product lines and emissions footprints.

Persons: Gavin Maguire, Christopher Cushing Organizations: German Chemicals Association, Reuters, Thomson Locations: LITTLETON , Colorado, Germany, Europe, South East Asia, Polymerupdate, United States

☆ Opinion: How Sudan went from revolution to civil war
▼ + stars: | 2023-04-17 | by ( Justin Lynch | ) edition.cnn.com time to read: +8 min

CNN —Four years ago, almost to the day, the people of Sudan were celebrating a revolution after overthrowing longtime dictator Omar al-Bashir. On one side are the Sudanese Armed Forces (SAF), led by Gen. Abdel Fattah al-Burhan. On the other side are the Rapid Support Forces (RSF), a paramilitary group led by Mohamed Hamdan Dagalo, known as Hemeti. Hamdok found that the legacy of 30 years of dictatorship meant that Sudan’s political and economic models were dilapidated. The lesson from Sudan is that a revolution is only the start of change, not the end.

☆ FDA staff says Biogen's ALS drug may have a 'clinical benefit' on a rare form of the disease
▼ + stars: | 2023-03-20 | by ( Annika Kim Constantino | ) www.cnbc.com time to read: +6 min

U.S. Food and Drug Administration staff on Monday said Biogen's investigational ALS drug may have a "clinical benefit" on a rare and aggressive form of the disease, despite failing a broader late-stage clinical trial last year. A separate exploratory analysis of the drug suggests "a clinical benefit with a longer duration of treatment," the staff wrote. It also found that tofersen reduced levels of a protein called neurofilament light (NfL,) which is "correlated with disease severity, disease progression rate, and survival in patients with ALS," according to the FDA staff. The first is to move forward with recommending accelerated approval based on tofersen's reduction of NfL in ALS patients. "SOD1-linked ALS is a particularly rare and aggressive form of an already rare and devastating disease," said Dr. Neil Thakur, The ALS Association's chief mission officer.

☆ Brazil cenbank chief says fiscal prudence central to inflation aims
▼ + stars: | 2022-11-11 | by ( Hernan Nessi | Nidhi Verma | ) www.reuters.com time to read: +2 min

BRASILIA, Nov 11 (Reuters) - Brazil's central bank chief Roberto Campos Neto emphatically defended the need for fiscal balance on Friday, following statements by leftist President-elect Luiz Inacio Lula da Silva that soured the markets by downplaying the issue's importance. In Britain, for example, former Prime Minister Liz Truss resigned after markets shunned her plans for major unfunded tax cuts. "I don't know if there was a Liz Truss moment for Brazil (yesterday), but it was a clear demonstration of the markets' sensitivity to the fiscal issue," said Campos Neto. He said the central bank's autonomy would pass "an important test" but believed in the continuity of that status under Lula's future administration. Campos Neto also stressed that the bank's policymakers are open to participating in the transition government.

☆ A controversial ALS drug potentially worth $1 billion is on the cusp of FDA approval. It could change Amylyx's fortunes and be a much-needed treatment for the rare disease.
▼ + stars: | 2022-09-26 | by ( Yeji Jesse Lee | ) www.businessinsider.com time to read: +7 min

The FDA may soon approve a new treatment for ALS, also known as Lou Gehrig's disease. If approved, Amylyx Pharmaceuticals's drug, AMX0035, will be a new treatment option for patients. A new drug for amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig's disease, is on the cusp of approval from the US Food and Drug Administration. The association said that treatment has the support of the larger ALS community and urged the FDA to "swiftly approve" AMX0035. By comparison, there are around 30,000 ALS patients in the US, meaning reimbursing AMX0035 would pose a much lighter burden on the CMS.

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