Eric Dane told the world what he thinks happens after death before he passed.
In a new posthumous Netflix interview titled Famous Last Words, the Grey’s Anatomy star sat down and opened up about his afterlife thoughts. As you know, the actor died on Thursday following a battle with ALS, and recorded this special to air after he passed.
In the interview, he said:
“I have a controversial relationship with the universe right now. I think when the lights go out, it’s over. I don’t believe that there’s another place for our souls to go. I think people believe that stuff because it provides them with a lot of comfort, but I’ve really come to grips with it.”
“I think, once the lights go out, out with the old, in with the new. I think [I’ve always believed that]. I do believe that when we go to sleep or however we go, once we’re gone, we’re gone. We live on in the memories of the people that will miss us.”
Aww… Well Eric will undoubtedly live on in all of our memories. That is something we know for 100% certainty!
May he rest in peace.
What do U think happens when we die? Let us know in the comments.
Eric Dane, the actor best known for his role as Dr. Mark Sloan on the hit medical series “Grey’s Anatomy,” has died at the age of 53, his family announced Thursday.
In April 2025, Dane announced he had been diagnosed with amyotrophic lateral sclerosis, or ALS.
“With heavy hearts, we share that Eric Dane passed on Thursday afternoon following a courageous battle with ALS,” his family said in a statement provided to CBS News. “He spent his final days surrounded by dear friends, his devoted wife, and his two beautiful daughters, Billie and Georgia, who were the center of his world.”
“Throughout his journey with ALS, Eric became a passionate advocate for awareness and research, determined to make a difference for others facing the same fight,” his family continued. “He will be deeply missed, and lovingly remembered always. Eric adored his fans and is forever grateful for the outpouring of love and support he’s received. The family has asked for privacy as they navigate this impossible time.”
Actor Eric Dane is photographed at the St. Regis in Washington, D.C., on Sept. 30, 2025.
Marvin Joseph/The Washington Post via Getty Images
Along with his long run on “Grey’s Anatomy,” Dane was a prolific actor with dozens of credits dating back to the early 1990s, including roles in television shows including “Euphoria” and “Charmed,” and films such as 2006’s “X-Men: Last Stand” and 2010’s “Burlesque.”
He is survived by his wife, actress Rebecca Gayheart, and their two daughters.
ALS, which is also known as Lou Gehrig’s disease — named after the New York Yankees player — impacts the nervous system and affects the brain and spinal cord, according to the Mayo Clinic. It worsens over time, and its cause is unknown. About 1 in 300 Americans are affected by ALS, the ALS Association told CBS News in 2023. According to the Cleveland Clinic, the life expectancy following an ALS diagnosis is three to five years.
At the time of his ALS announcement last year, Dane said he planned to continue acting, and in a virtual panel in December, he said it was “imperative that I share my journey with as many people as I can because I don’t feel like my life is about me anymore.”
Dane was born on Nov. 9, 1972, and raised in California. His father, a Navy man, died of a gunshot wound when he was 7. After high school, he moved to Los Angeles to pursue acting, landing guest roles on shows like “Saved by the Bell,” “Married…With Children” and “Charmed,” and one season of the short-lived medical drama “Gideon’s Crossing.”
His big break arrived in the mid-2000s, when he was cast as Dr. Mark Sloan, aka McSteamy, on the ABC medical drama “Grey’s Anatomy,” a role he would play from 2006 until 2012 and reprise in 2021.
“We are deeply saddened by the loss of Eric Dane,” ABC and 20th Television, which produces “Grey’s Anatomy,” said in a statement to CBS News. “His remarkable talent and unforgettable presence on “Grey’s Anatomy” left a lasting impact on audiences around the world, and his courage and grace during his battle with ALS inspired so many. Our hearts are with his family, friends, and colleagues, as well as the many fans whose lives were touched by his work.”
In 2019, he did a complete 180 and became Cal Jacobs, a troubled married man, in HBO’s provocative drama “Euphoria,” a role he continued in up until his death.
“We are deeply saddened by the news of Eric Dane’s passing,” an HBO spokesperson told CBS News in a statement. “He was incredibly talented and HBO was fortunate to have worked with him on three seasons of Euphoria. Our thoughts are with his loved ones during this difficult time.”
Sam Levinson, creator of “Euphoria,” said in a statement he was “heartbroken by the loss of our dear friend Eric.”
“Working with him was an honor. Being his friend was a gift,” Levinson said. “Eric’s family is in our prayers. May his memory be for a blessing.”
Dane also starred as Tom Chandler, the captain of a U.S. Navy destroyer at sea after a global catastrophe wiped out most of the world’s population, in the TNT drama “The Last Ship.” In 2017, production was halted as Dane battled depression.
Dane became an advocate for ALS awareness, speaking at a news conference in Washington on health insurance prior authorization.
“Some of you may know me from TV shows, such as ‘Grey’s Anatomy,’ which I play a doctor. But I am here today to speak briefly as a patient battling ALS,” he said in June 2025. In September of that year, the ALS Network named Dane the recipient of their advocate of the year award, recognizing his commitment to raising awareness and support for people living with ALS.
The ALS Association said in a statement on social media that, “In his final months, (Dane) didn’t just fight for himself — he fought for everyone living with ALS and their loved ones. He advocated for ALS research funding, raised awareness, and never stopped. His voice will carry on. Our hearts go out to his family and friends.”
The nonprofit group I Am ALS, which worked with Dane, said in its own statement late Thursday that Dane “brought humility, humor, and visibility to ALS and reminded the world that progress is possible when we refuse to remain silent. Eric was more than a supporter of our mission—he was part of our family.”
A memoir by Dane is scheduled to be published later this year: “Book of Days: A Memoir in Moments.”
“I want to capture the moments that shaped me — the beautiful days, the hard ones, the ones I never took for granted — so that if nothing else, people who read it will remember what it means to live with heart,” Dane said in a statement around the book’s announcement. “If sharing this helps someone find meaning in their own days, then my story is worth telling.”
Eric Dane, the celebrated actor best known for his roles on Grey’s Anatomy and Euphoria and who later in life became advocate for ALS awareness, died Thursday. He was 53.
His representatives said Dane died from amyotrophic lateral sclerosis, known also as Lou Gehrig’s disease, less than a year after he announced his diagnosis.
“He spent his final days surrounded by dear friends, his devoted wife, and his two beautiful daughters, Billie and Georgia, who were the center of his world,” said a statement that requested privacy for his family. “Throughout his journey with ALS, Eric became a passionate advocate for awareness and research, determined to make a difference for others facing the same fight. He will be deeply missed, and lovingly remembered always. Eric adored his fans and is forever grateful for the outpouring of love and support he’s received.”
Channing Tatum says he got injured on set of ‘Avengers: Doomsday’
Dane developed a devoted fanbase when his big break arrived in the mid-2000s: He was cast as Dr. Mark Sloan, aka McSteamy, on the ABC medical drama Grey’s Anatomy, a role he would play from 2006 until 2012 and reprise in 2021. In 2019, he did a complete 180 from the charming McSteamy and became the troubled Cal Jacobs in HBO’s provocative drama Euphoria, a role he continued in up until his death.
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Dane also starred as Tom Chandler, the captain of a U.S. Navy destroyer at sea after a global catastrophe wiped out most of the world’s population, in the TNT drama The Last Ship. In 2017, production was halted as Dane battled depression.
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ALS gradually destroys the nerve cells and connections needed to walk, talk, speak and breathe. Most patients die within three to five years of a diagnosis.
Dane became an advocate for ALS awareness, speaking a news conference in Washington on health insurance prior authorization. “Some of you may know me from TV shows, such as Grey’s Anatomy, which I play a doctor. But I am here today to speak briefly as a patient battling ALS,” he said in June 2025. In September of that year, the ALS Network named Dane the recipient of their advocate of the year award, recognizing his commitment to raising awareness and support for people living with ALS.
Dane was born on Nov. 9, 1972 and raised in Northern California. His father, a Navy man, died of a gunshot wound when he was 7. After high school, he moved to Los Angeles to pursue acting, landing guest roles on shows like Saved by the Bell, Married…With Children, Charmed and X-Men: the Last Stand, and one season of the short-lived medical drama Gideon’s Crossing.
A memoir by Dane is scheduled to be published in late 2026. Book of Days: A Memoir in Moments will be released by Maria Shriver’s The Open Field, a Penguin Random House imprint. According to Open Field, Dane will look back upon key moments in his life, from his first day at work on Grey’s Anatomy to the births of his two daughters and learning that he had ALS.
“I want to capture the moments that shaped me — the beautiful days, the hard ones, the ones I never took for granted — so that if nothing else, people who read it will remember what it means to live with heart,” Dane said in a statement around the book’s announcement. “If sharing this helps someone find meaning in their own days, then my story is worth telling.”
Dane is survived by his wife, actor Rebecca Gayheart, and their two teen daughters, Billie Beatrice and Georgia Geraldine. Gayheart and Dane wed in 2004 and separated in September 2017. Gayheart filed for divorce in 2018, but later filed to dismiss the petition. In a December essay for New York magazine’s The Cut reflecting on Dane’s diagnosis, Gayheart called their dynamic “a very complicated relationship, one that’s confusing for people.” She said they never got a divorce, but dated other people and lived separately.
“Our love may not be romantic, but it’s a familial love,” she said. “Eric knows that I am always going to want the best for him. That I’m going to do my best to do right by him. And I know he would do the same for me. So whatever I can do or however I can show up to make this journey better for him or easier for him, I want to do that.”
The latest on medical cannabis and ALS explores symptoms, research, patient relief options, and emerging clinical insights
It has been in the news with actor Eric Dane struggling with the ALS. Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, remains one of the most challenging neurological disorders confronting patients and clinicians today. Characterized by the progressive degeneration of motor neurons—the nerve cells that control voluntary muscles—ALS leads to muscle weakness, loss of mobility, difficulty speaking and swallowing, and ultimately respiratory failure. There is currently no cure for ALS, and most individuals diagnosed with the condition live only three to five years after symptom onset. Treatments focus on slowing progression and managing symptoms to improve quality of life. But what is the latest on medical cannabis and ALS.
Patients with ALS may first notice subtle symptoms such as muscle twitching, weakness in a limb, or slurred speech, which gradually evolve into more severe impairments affecting daily living. As the disease progresses, individuals often struggle with activities like walking, speaking, eating, and breathing. While cognitive function is usually preserved, some people experience changes in emotional expression and mood. There is a strong emphasis in clinical care on coordinated support—spanning physical therapy, respiratory assistance, nutritional counseling, and psychosocial support—to address complex patient needs.
Amid ongoing research into traditional pharmaceuticals and genetic therapies, interest has grown in the potential role of medical cannabis as a complementary approach for symptom management in ALS. Cannabinoids—the active compounds in cannabis such as THC (tetrahydrocannabinol) and CBD (cannabidiol)—interact with the body’s endocannabinoid system, which is involved in regulating pain, muscle tone, appetite, and mood. Preclinical studies in animal models suggest cannabinoids might exert antioxidative, anti-inflammatory, and neuroprotective effects could slow the degeneration of motor neurons, though more rigorous clinical trials in humans are needed.
In patient surveys and early clinical observations, people with ALS have reported medical cannabis helps relieve several symptoms commonly associated with the disease. These include pain, poor appetite, anxiety, muscle cramps, spasticity, and drooling. Some users also report improvements in sleep quality and overall well-being. However, it’s important to note the definitive evidence of long-term benefits or effects on disease progression in humans is still limited, and outcomes can vary widely between individuals. A recent retrospective study found short-term symptom relief for pain and anxiety with medical marijuana use but also observed a correlation with faster functional decline, underscoring the complexity of interpreting these findings and the need for controlled clinical research.
Ongoing trials—such as placebo-controlled studies evaluating cannabis-based extracts for slowing disease progression—aim to clarify whether cannabinoids have a measurable impact on ALS beyond symptom relief. As researchers continue to explore both conventional and alternative therapies, patients and clinicians alike emphasize individualized care plans weigh potential benefits, side effects, and legal considerations related to medical cannabis. For authoritative research news, advances in clinical trials, and emerging treatment strategies beyond cannabis, consider the ALS Association and academic neurology publications as additional resources.
Medical cannabis is not a cure for ALS, but for some patients it may offer meaningful relief of specific symptoms when used under medical supervision. The landscape of ALS treatment is evolving, and continued research will help clarify where cannabis may fit within broader therapeutic strategies for this devastating disease.
KCCI EIGHT NEWS AT TEN. A NORWALK WOMAN WHO LOST HER VOICE TO ALS GOT IT BACK IN AN UNEXPECTED WAY. KCCI ABIGAIL CURTIN SPOKE WITH HER THIS EVENING. ABIGAIL, TELL US A LITTLE MORE ABOUT HER STORY. WELL, THIS IS A PRETTY INCREDIBLE STORY, AND THERE ARE A LOT OF THINGS THAT PEOPLE CAN STRUGGLE WITH WHEN THEY HAVE ALS. MUSCLE WEAKNESS. DIFFICULTY EATING, EATING, AND COMMUNICATING. THOSE CAN BE HARD. AND THOSE ARE JUST SOME OF THE STRUGGLES THAT ROBIN LEEPER HAS HAD TO OVERCOME SINCE SHE WAS DIAGNOSED BACK IN 2023. BUT NEW TECHNOLOGY HAS BEEN ABLE TO EASE SOME OF THAT STRUGGLE AND GIVE HER A PART OF HERSELF BACK. WHEN ROBIN LEEPER WAS DIAGNOSED WITH ALS IN 2023, IT WAS ONE OF THE HARDEST MOMENTS OF HER LIFE. BUT WHEN SHE LOST HER ABILITY TO TALK, IT WAS EVEN HARDER. I CRIED, AND FOR THE FIRST YEAR I COULDN’T EVEN SAY ALS WITHOUT CRYING. AT THE TIME, SHE WAS THE PARKS AND REC DIRECTOR FOR THE CITY OF NORWALK. FOR A WHILE, SHE TRIED OTHER FORMS OF COMMUNICATION LIKE TEXT TO SPEECH, SOFTWARE OR SIGN LANGUAGE. BUT THAT’S WHERE THE CITY’S MARKETING AND COMMUNICATION SPECIALIST, TY LUE, CAME IN. WE HAVE FIVE SWIMMING POOLS. SHE COMBED THROUGH HOURS OF PUBLIC MEETINGS, RECORDS ISOLATING CLIPS OF ROBIN SPEAKING FROM WHEN SHE STILL COULD. FROM THERE, SHE UPLOADED THEM INTO AN AI SOFTWARE TO RECREATE ROBIN’S VOICE, WHICH SHE USED TO ACCEPT. NORWALK CITIZEN OF THE YEAR AWARD. I AM TRULY, DEEPLY HUMBLED AND GRATEFUL FOR THIS RECOGNITION. IT SOUNDED AS IF SHE WAS JUST STANDING THERE SPEAKING ON HER OWN. IN FACT, I HAD SEVERAL PEOPLE SAY I DIDN’T REALIZE THAT SHE WAS PLAYING A RECORDING OF HER VOICE. BUT FOR LEEPER, IT WASN’T JUST EXCITING TO BE ABLE TO HEAR HER OWN VOICE AGAIN. IT WAS A CHANCE TO FEEL LIKE HERSELF AGAIN. IT’S YOUR IDENTITY. PEOPLE CAN HEAR YOUR VOICE WITHOUT SEEING YOUR FACE, AND THEY KNOW THAT’S YOU. AS FOR WHAT’S NEXT, SHE’S GOT A NEW PRIORITY. FINDING A CURE. BOXHOLM. LIKE I SAID, A PRETTY INCREDIBLE STORY. AND SPEAKING OF FINDING A CURE, LEEPER WILL BE AT THIS SATURDAY’S WALK TO DEFEAT ALS IN ALTOONA. FOR MORE DETAILS ON THAT WALK AND HOW YOU CAN HELP SUPPORT LEEPER. BE SURE TO CHECK OUT THIS STORY ON KCCI.COM. FIRST OF ALL, AN AMAZING EXAMPLE OF THE GOOD THAT TECHNOLOGY CAN DO. ABSOLUTELY A CREDIT TO EVERYBODY WHO HELPED THIS HAPPEN. AND ROBIN, YOU KNOW, WE’RE THINKING OF YOU AND ADMIRE YOUR STRENGTH. AND I KNO
Woman who lost her ability to speak due to ALS got it back in an unexpected way
An Iowa woman who lost her ability to speak due to ALS got it back in an unexpected way.Robin Leaper was diagnosed with ALS, or amyotrophic lateral sclerosis, in 2023. Since then, she’s struggled with muscle weakness and difficulty eating, and she’s no longer able to speak. It’s been an adjustment, to say the least.”For the first year, I couldn’t even say ALS without crying,” she said. When she was diagnosed, she was the Parks and Recreation director for the city of Norwalk.Since then, she’s tried to communicate in other ways, like text-to-speech software or sign language, but neither one has allowed her to use her own voice.Until the city’s marketing and communications specialist, Tai Lieu, came in.Lieu combed through hours of public meeting recordings in which Leaper spoke, isolating her vocals and uploading them to an AI voice recreation software.That software allows Leaper to type her words, which are then read aloud in her own voice.”It sounded as if she was just standing there, speaking on her own,” Lieu said of Leaper’s first attempt at using the software when she won Norwalk’s Citizen of the Year Award last year. “I had several people say, ‘I didn’t realize she was playing a recording of her voice.’”But for Leaper, the AI recreation does more than allow her to use her own voice; it allows her to feel like herself again.”It’s your identity,” she said. “People can hear your voice without seeing, and they know it’s you. It gave me back a little piece ALS stole from me.”As for what’s next, Leaper says she has a new priority: finding a cure.She plans to start with Altoona’s Walk to Defeat ALS on Saturday.
An Iowa woman who lost her ability to speak due to ALS got it back in an unexpected way.
Robin Leaper was diagnosed with ALS, or amyotrophic lateral sclerosis, in 2023. Since then, she’s struggled with muscle weakness and difficulty eating, and she’s no longer able to speak.
It’s been an adjustment, to say the least.
“For the first year, I couldn’t even say ALS without crying,” she said.
When she was diagnosed, she was the Parks and Recreation director for the city of Norwalk.
Since then, she’s tried to communicate in other ways, like text-to-speech software or sign language, but neither one has allowed her to use her own voice.
Until the city’s marketing and communications specialist, Tai Lieu, came in.
Lieu combed through hours of public meeting recordings in which Leaper spoke, isolating her vocals and uploading them to an AI voice recreation software.
That software allows Leaper to type her words, which are then read aloud in her own voice.
“It sounded as if she was just standing there, speaking on her own,” Lieu said of Leaper’s first attempt at using the software when she won Norwalk’s Citizen of the Year Award last year. “I had several people say, ‘I didn’t realize she was playing a recording of her voice.’”
But for Leaper, the AI recreation does more than allow her to use her own voice; it allows her to feel like herself again.
“It’s your identity,” she said. “People can hear your voice without seeing, and they know it’s you. It gave me back a little piece ALS stole from me.”
As for what’s next, Leaper says she has a new priority: finding a cure.
She plans to start with Altoona’s Walk to Defeat ALS on Saturday.
“Well, if you’re reading this obituary, I’m dead. I died of FOMO due to complications from ALS,” reads an obituary for Linda Murphy, also written by Linda Murphy.Justine Hastings smiled as she read her mother’s obituary, because she knew how much she feared missing out on life.”She would be the one on the dance floor, starting the party; she was the party,” Hastings said.The Massachusetts woman passed on Sept. 21, and her heart shone through in the obituary she wrote herself, using humor to describe how her life was impacted by an ALS diagnosis, like when she started using a respirator at night.”We became a throuple about a year and a half ago when hose, my bipap, moved into the marital bed,” Murphy wrote.Her ALS diagnosis came in 2022, about a decade after she fought and beat breast cancer. She even wrote a book about that battle.”She always wanted to say – ‘As long as I can be positive in my little world, maybe it can spread,’” Hastings said.Her obituary urged people to show kindness to strangers and avoid negativity.”Please be kind to everyone: the telemarketer, the grocery clerk, the Dunkin’s staff, the tailgater, your family, your friends. Speak nicely and positively. Is there really ever a reason to be negative? I don’t think so,” the obituary says.Hastings said her mother “wanted to go viral, spread a message to spread happiness and be kind.”The obituary also gives directions to those who plan to attend her funeral service.”If you were a stinker and meanie to me or my family or friends during my lifetime … Please do everyone a favor and STAY AWAY, we don’t want your negative drama & energy. Only nice, loving people are welcome,” she wrote. Murphy also told her loved ones, “PLEASE PLEASE PLEASE don’t waste money on flowers.””Buy a bunch of scratch tickets and give them out to strangers along your way. Make people happy, that is the best way that you can honor my memory,” she wrote.Now, Hastings hopes her 60-year-old mother’s final words can reach people around the world.”My advice is to say yes to party, trip, adventure, raise a glass to me in cheers,” Murphy wrote in her obituary. “Just live life to the fullest. Never know what tomorrow brings, so say yes to today.”
“Well, if you’re reading this obituary, I’m dead. I died of FOMO due to complications from ALS,” reads an obituary for Linda Murphy, also written by Linda Murphy.
Justine Hastings smiled as she read her mother’s obituary, because she knew how much she feared missing out on life.
“She would be the one on the dance floor, starting the party; she was the party,” Hastings said.
The Massachusetts woman passed on Sept. 21, and her heart shone through in the obituary she wrote herself, using humor to describe how her life was impacted by an ALS diagnosis, like when she started using a respirator at night.
“We became a throuple about a year and a half ago when hose, my bipap, moved into the marital bed,” Murphy wrote.
Her ALS diagnosis came in 2022, about a decade after she fought and beat breast cancer. She even wrote a book about that battle.
“She always wanted to say – ‘As long as I can be positive in my little world, maybe it can spread,’” Hastings said.
Her obituary urged people to show kindness to strangers and avoid negativity.
“Please be kind to everyone: the telemarketer, the grocery clerk, the Dunkin’s staff, the tailgater, your family, your friends. Speak nicely and positively. Is there really ever a reason to be negative? I don’t think so,” the obituary says.
Hastings said her mother “wanted to go viral, spread a message to spread happiness and be kind.”
The obituary also gives directions to those who plan to attend her funeral service.
“If you were a stinker and meanie to me or my family or friends during my lifetime … Please do everyone a favor and STAY AWAY, we don’t want your negative drama & energy. Only nice, loving people are welcome,” she wrote.
Murphy also told her loved ones, “PLEASE PLEASE PLEASE don’t waste money on flowers.”
“Buy a bunch of scratch tickets and give them out to strangers along your way. Make people happy, that is the best way that you can honor my memory,” she wrote.
Now, Hastings hopes her 60-year-old mother’s final words can reach people around the world.
“My advice is to say yes to party, trip, adventure, raise a glass to me in cheers,” Murphy wrote in her obituary. “Just live life to the fullest. Never know what tomorrow brings, so say yes to today.”
Hope is a strong emotion that can propel us through any challenge that confronts us. A group of people who radiate hope are members of the Amyotrophic lateral sclerosis (ALS) community. ALS is a neurodegenerative disease that, unfortunately, doesn’t have a cure. According to the ALS Association, people who are diagnosed with ALS usually have two to five years to live. Even with that grim circumstance, people with ALS Exude hope and still enjoy life while they have it. The ALS association seeks to support people with ALS and their caregivers. With empathy and enthusiasm, this organization desires to give those with this disease a chance to live and experience the world before the end of their journey.
“ALS is a devastating disease Physically, emotionally, and financially. This needs more awareness because we should care about people’s opportunity to live, love, and engage with a world in ways that are meaningful to them,” said Dean Feener, Chief Information Officer of the ALS Association.
The ALS Association has several projects underway to raise awareness of the disease. The #ShareYourALSStory campaign began on May 1. This initiative highlights people living with ALS and reveals their daily realities. ALS is such a crushing disease because your brain is losing its ability to control your muscles. This extends to involuntary muscles. The damage of ALS can lead to a person losing their ability to breathe, and the last thing they can control is twitching their eye. As technology advances, it becomes a more vital crutch for the ALS community to rely on to operate.
“A breakthrough for ALS is how technology supports people in the ALS community. Apple has a personal voice. It’s where you can record different phrases on your iPhone, and it creates your voice. I think as technology continues to expand and grow. There will be ways for people with ALS to continue engaging in the world around them in meaningful ways,” said Feener.
Feener further explains that much of the association’s support in communities like Atlanta comes through exciting technology solutions. The ALS Association partners with many companies to aid people with the disease. They recently launched a dropship program that allows equipment to be delivered to their homes—the organization partners with the CDC to register ALS members to engage in healthcare research. The association partnered with a British company called Nouveau Air to deliver remote spectrometer devices. This equipment measures lung capacity and how someone breathes. The data from the spectrometer is sent to a pulmonologist or a breathing medical specialist.
A moment of fun that illuminated ALS was the viral Ice Bucket Challenge. In 2014, 17 million people worldwide participated in recording themselves pouring a bucket of ice water over their heads. Launched by Anthony Senerchia, Pete Frates, and Pat Quinn, three young men with ALS, the trend raised 115 million dollars for ALS research and care. The Ice Bucket Challenge was the most significant event that brought awareness to ALS.
“This was probably the first viral fundraising phenomenon. Since the Ice Bucket Challenge, we’ve supported more than 550 projects in the United States and 18 other countries with $154 million. People’s generosity has had a great impact,” said Feener.
Summer 2024 marks the tenth anniversary of the Ice Bucket Challenge. The ALS Association celebrates the noteworthy moment by challenging everyone to fill their buckets and do it again. Using the hashtag #icebucket10, you can watch recent videos of people dumping cold water on their heads for a good cause.
ALS is a life-altering disease that draws a substantial emotional toll on individuals and their family members. The ALS Association continues to advocate, support, and fundraise for people in this community so no more people have to pay for it.
Star Trek actor Kenneth Mitchell lost his battle with ALS. Can Medical Marijuana help others who suffer?
The Fresh Toast – It is a devastating disease and more research needs to be done to help patients. And in regards to help, what about ALS and medical marijuana?
Roughly over 5,000 people in Canada and the U.S. are diagnosed with ALS each year with over 20,000 smuggling with the disease. Over 15 people are diagnosed daily. ALS is estimated to be responsible for as many as five in every 100,000 deaths in people 20 years or older. The average life expectancy of a person with ALS is between two to five years from the time of diagnosis. Some people do live for more than five years. More than half of all ALS patients live more than three years after diagnosis, 20 percent live five years or more, up to 10 percent live more than 10 years, and about five percent live 20 years or more. What about ALS and medical marijuana.
Amyotrophic lateral sclerosis is a fatal type of motor neuron disease. It is characterized by progressive degeneration of nerve cells in the spinal cord and brain. It is also called Lou Gehrig’s disease, after a famous baseball player who died from the disease.
Currently, there is no cure for ALS but there are some treatments available.
Cannabis has properties applicable to symptom management of ALS, including analgesia, muscle relaxation, bronchodilation, saliva reduction, appetite stimulation, and sleep induction. With respect to the treatment of ALS, from both a disease modifying and symptom management viewpoint, clinical trials with cannabis are key to helping patients. Based on the currently available scientific data, it is reasonable to think that cannabis might significantly slow the progression of ALS, potentially extending life expectancy and substantially reducing the overall burden of the disease.
As ALS progresses, though, more and more symptoms are noticed. These are the most common symptoms of ALS:
Twitching and cramping of muscles, especially those in the hands and feet
Loss of motor control in the hands and arms
Impairment in the use of the arms and legs
Tripping and falling
Dropping things
Persistent fatigue
Uncontrollable periods of laughing or crying
Slurred or thick speech and trouble in projecting the voice
As the disease progresses, symptoms may include:
Trouble breathing
Trouble swallowing
Paralysis
If you have any of these symptoms, it is important to seek a physician’s guidance immediately. Otherwise, be an advocate and champion for more medical research.
Hosted by Jane Pauley. In our cover story, Lee Cowan revisits a man who has beaten the odds on his diagnosis of ALS – and successfully lobbied for more research funding from Congress. Also: Mark Phillips sits down with Ridley Scott, director of the new epic film “Napoleon”; Kelefa Sanneh talks with 2023 Rock & Roll Hall of Fame inductee Chaka Khan; Seth Doane looks at the scourge of e-waste, exported from the West to the global South; Robert Costa interviews Atlantic writer Tim Alberta about his book on evangelical Christians and politics, called “The Kingdom, the Power, and the Glory”; and Martha Teichner checks out the art of gourd carving.
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The first time “Sunday Morning” met Brian Wallach, in 2021, we feared it might be our last. He was already four years into a diagnosis of amyotrophic lateral sclerosis (or ALS), a rare and incurable disease that on average takes patients in 2-5 years.
But we’re pleased to say this past Summer Brian and his wife, Sandra Abrevaya, invited us back to their home outside Chicago. With their two daughters, now six and eight, the family just celebrated their sixth Thanksgiving since the diagnosis. Only about 20% of ALS patients ever achieve that kind of longevity.
Communicating through Sandra, Brian said, “I have been progressing, but the good news is I’m still here.”
Cowan asked, “How much has that extra time meant to both of you?”
“It’s everything,” Brian replied.
As ALS does, it’s been slowly killing off the nerves that move Brian’s muscles, including those for speech. So, sometimes a smile and a wink will just have to do. “I’ve become really good at winking, that’s true!” he said.
But even a soft-spoken Brian is a force to be reckoned with. Although he might need round-the-clock care, Brian is still pushing as hard as he ever did – working long days, taking long trips, all to keep his promise to improve the lives of ALS patients everywhere.
That work all began back in 2019 when Brian and Sandra launched I am ALS, a grassroots movement that has given ALS patients a voice in their own care.
Brian and Sandra had once been staffers in the Obama administration, so they pretty much knew their way around Washington. And almost right out of the gate, I Am ALS was instrumental in helping increase federal funding for research by $83 million, and that helped launch dozens of clinical trials for new ALS therapies.
But Brian himself didn’t qualify for those clinical trials; doctors thought he wouldn’t live long enough anyway to benefit. Sandra said, “Basically they treat you like it’s a straight line to palliative care, and they tell you to get your affairs in order and prepare to die.”
One of the most promising was an experimental therapy called AMX-0035. Brian was taking some of the ingredients, but he couldn’t get his hands on the drug itself, because the FDA hadn’t approved it.
“We are facing a disease that is 100 percent fatal, so we are willing to take those risks,” he said.
Just like a political campaign, Brian started firing up supporters for a bill that he later helped write, called Act for ALS. “The thinking behind ACT for ALS is use this funding to pay for this group of patients to get access to the drug before it’s officially approved by the FDA,” Sandra said.
In July 2021, Brian sat next to Sandra in a Capitol Hill hearing room, in tears. “This is our closing argument for our lives,” he said. “We want to live. You have the power to make that possible.”
Cowan noted, “When you sat down, you really kind of lost it.”
“I was overwhelmed by the sense of responsibility that I felt to other patients,” Brian said.
It was a long and difficult fight. Giving unapproved therapies to terminally-ill patients was an idea fraught with moral pitfalls. And yet, the bill was passed, and in December 2021 H.R. 3537, the Accelerating Access to Critical Therapies for ALS Act, was signed into law. “Brian Wallach and his wife, Sandra, I say hi to you both. They turned their pain into purpose,” President Joe Biden said. “We’re gonna make real progress.”
If it sounds like a Hollywood plot, well, you’re not that far off. Their friend Chris Burke began working on a documentary called “No Ordinary Campaign.” Pop star Rachel Platten was so moved she let them use her single “Fight Song” as the soundtrack.
To watch a trailer for “No Ordinary Campaign: click on the video player below:
But the change Brian and Sandra are affecting didn’t end where the documentary does. In fact, their newest fight is helping ALS patients get better access to specialists.
“We tried to change the way that doctors were practicing medicine in neurodegenerative diseases, and we hit a wall,” said Sandra. “And so, we started our own medical practice.”
It’s called Synapticure, a for-profit telemedicine practice that gets people with a host of neurological diseases (including ALS) the care they need faster. Those treating ALS now have more options than they’ve had in decades. The FDA has approved two more therapies for ALS, including the one that Brian had been denied when we first met him.
AMX-0035 (now called Relyvrio) tastes pretty awful, Brian says, but he thinks has made a huge difference.
Sandra said, “We credit Brian being as healthy as he is relatively speaking to the fact that we were one of the first people who found a way to at least take a portion of this drug, for years.”
Brian Wallach and Sandra Abrevaya.
CBS News
The other newly-approved therapy is Toferson, now under the brand name Qalsody.
In 2019, Chris Snow got access to it as part of a clinical trial for his rare inherited form of ALS. Chris was given just six months to a year to live, but he was still going strong more than four years later, and his wife, Kelsie, had no doubt it was because of the drug.
“The quality of life that this has given us is really a miracle,” she said in 2021.
They shouted to the rafters how active Chris had remained; as recently as last summer they were posting pictures of him mowing the lawn, and out on a boat. “If you can see and care about my family and that makes you care about this cause, that’s what I’m going for,” Kelsie said.
They were as optimistic as they come, until Chris went into cardiac arrest two months ago, and never recovered – a loss that hit Brian and Sandra hard.
But it’s also emboldened them to fight even harder. Brian is so defiant, that even though his legs are uncooperative, he still pushes himself to walk. And he says, every day he gets to try gives science another day to take its steps toward finding a lasting remedy.
And Brian says he is bound and determined to be here when that happens.
Cowan asked, “How do you stay so positive, knowing that there is no cure, and you just keep pushing forward?”
“I have hope that I can be a part of the first generation to actually survive ALS,” Brian replied.
We all hope he’s right.
For more info:
Story produced by Deirdre Cohen. Editor: Ed Givnish.
Federal health advisers voted overwhelmingly against an experimental treatment for Lou Gehrig’s disease at a Wednesday meeting prompted by years of patient efforts seeking access to the unproven therapy.
The panel of Food and Drug Administration experts voted 17-1 that drugmaker Brainstorm’s stem cell-based treatment has not been shown effective for patients with the fatal, muscle-wasting disease known as ALS, or amyotrophic lateral sclerosis. One panel member abstained from voting.
While the FDA is not bound by the vote, it largely aligns with the agency’s own strikingly negative review released earlier this week, in which staff scientists described Brainstorm’s application as “scientifically incomplete” and “grossly deficient.”
What were the FDA panel’s objections to the treatment?
“Creating false hope can be considered a moral injury and the use of statistical magic or manipulation to provide false hope is problematic,” said Lisa Lee, a bioethics and research integrity expert from Virginia Tech, who voted against the treatment. The lone positive vote came from a panel member representing patients.
Wednesday’s public meeting was essentially a longshot attempt by Brainstorm and the ALS community to sway FDA’s thinking on the treatment, dubbed NurOwn.
Brainstorm’s single 200-patient study failed to show that NurOwn extended life, slowed disease or improved patient mobility. But FDA agreed to convene the panel of outside advisers after ALS patients and advocates submitted a 30,000-signature petition seeking a public meeting.
In the last year, the FDA has approved two new drugs for ALS, after a nearly 20-year drought of new options. The approvals followed intense lobbying by advocacy groups.
FDA leaders have recently emphasized a new level of “regulatory flexibility” when reviewing experimental treatments for fatal, hard-to-treat conditions, including ALS, Alzheimer’s and muscular dystrophy.
But the agency appears unwilling to overlook the failed study results and missing information in Brainstorm’s submission, including key details on manufacturing and quality control needed to establish the product’s safety.
“It really is a disease that needs a safe and effective treatment and there are a lot of other prospects out there that we need to encourage. Approving one like this would get in the way of that,” said Dr. Kenneth Fischbeck of the National Institutes of Health.
What do ALS patients say about the treatment?
More than a dozen people spoke during a public comment session Wednesday, including ALS patients, their family members and physicians who implored FDA to grant approval. Several speakers presented before-and-after videos showing patients who participated in Brainstorm’s study walking, climbing stairs and performing other tasks that they attributed to NurOwn.
“When Matt is on Nurown it helps him, when he’s off of it he gets worse,” said Mitze Klingenberg, speaking on behalf of her son, Matt Klingenberg, who was diagnosed with ALS in 2018.
The FDA is expected to issue a decision on the therapy by Dec. 8.
Israel-based Brainstorm Cell Therapeutics’ stock price has lost more than 90% of its value over the last year, falling to 39 cents per share before being halted ahead of Wednesday’s FDA meeting.
What is ALS?
ALS destroys nerve cells in the brain and spinal cord needed to walk, talk, swallow and — eventually — breathe. Most people die within three to five years of their first symptoms.
“ALS may be considered a rare disease, but it’s actually more common than people think, affecting 1 in 300 Americans. It can strike anyone at any time and is always fatal,” Brian Frederick, senior vice president of communication at the ALS Association, told CBS News.
More than 30,000 people in the United States are believed to be living with ALS, and an average of 5,000 people nationwide are diagnosed with ALS each year, according to the Centers for Disease Control and Prevention.
It is also known as Lou Gehrig‘s disease, named for the legendary New York Yankees player who was stricken with it in the late 1930s.
After he was diagnosed with ALS, Craig Reagan’s friends came together, putting in hundreds of hours to restore his 1973 Ford Mustang, which he had owned since high school. Steve Hartman has the story in “On the Road.”
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College Station, Texas — If there’s anything even remotely good about having ALS, 56-year-old Craig Reagan of College Station, Texas, says it may be a heightened sense of gratitude.
Gratitude for caregivers like his wife Nancy, his children, his dog Taco, and his 1973 Ford Mustang — which even though it had stopped running back in 1999 — took up permanent residence at his house.
“It’s a big paperweight,” Craig explained to CBS News, adding that he “just had such an attachment to it.”
Reagan has had the Mustang since high school.
“And he was proud of it,” Nancy said.
Craig had hoped that someday his two sons might want to fix it up with him, but they showed no interest in cars. Then, he planned to do it himself, but he was diagnosed with ALS in 2016.
ALS, also known as Lou Gehrig’s disease, is a neurodegenerative disease that affects nerve cells in the brain and spinal cord, causing patients to lose their ability to move and speak.
The Mustang sat rotting — until some old high school friends caught wind.
“And everybody, as soon as I called these guys, they were like, ‘Yeah, let’s do it,’” Richard Watson said.
For the next year, the friends went to work on it, putting in hundreds of hours while other kids from the class of 1985 paid for parts.
And not long ago, that big, immovable paperweight was ready to lift off.
“It was almost like a piece of him…that came back to life,” his wife Nancy said.
While there is still no known cure for ALS, Craig has clearly found his treatment.
“I feel like I’m a teenager,” Craig said.
And as for the people who made the moment possible, they insist the bigger gift was the lesson they received.
“He reminded us of something maybe we forgot,” Watson said.
“Just do good stuff for people,” friend Mike Silva added. “That’s all that matters. Just do good stuff today.”
Do good stuff today. There’s no better medicine on earth.
New York City — Brian Jeansonne talks to the world about his journey with ALS through TikTok videos, which the 46-year-old makes with his family and caregivers.
He began recording them when he was still able to speak on his own.
“I’m married for almost 18 years, have five kids,” Jeansonne said in one such video.
“But nothing that has been taken away makes me as sad as losing my ability to speak,” he said in another.
However, with the help of artificial intelligence, Jeansonne has been able to keep his ability to speak through a process called voice preservation.
“Imagine having no way to communicate your wants or needs or your love,” Jeansonne told CBS News. “Voice preservation gives that back to us. This, in many ways, saved my life.”
CBS News first covered the technology of voice preservation in 2016. At the time, ALS patients at Boston Children’s Hospital recorded their voices to play back when they lost their ability to speak. Since then, the technology has only improved, thanks to AI.
“It’s allowing people to have to record fewer messages,” said John Costello, director of the Augmentative Communication Program at Boston Children’s Hospital. “The quality is far superior to what we were able to do in the early days.”
ALS, also known as Lou Gehrig’s disease, is a neurodegenerative disease that affects nerve cells in the brain and spinal cord, causing patients to lose their ability to move and speak. An average of 5,000 people in the U.S. are diagnosed with ALS each year, according to the Centers for Disease Control and Prevention.
Jeansonne and his wife, Kristy, spoke to CBS News through Zoom, which allowed Brian to receive some of the questions in advance, since he has to type out his responses in real time.
The camera on his device tracks his eye movements, allowing them to function like a cursor.
“I am amazed by it,” Jeansonne said of the technology. “That fact that I can sound kind of like me is a true gift to me and my family.”
“To me, he’s there,” Kristy Jeansonne added. “His voice is there. It’s just totally life changing.”
Voice preservation can cost more than $1,000, but there are nonprofits that can help pay for it.
On their 20th anniversary, Brian used the technology to repeat his wedding vows to Kristy, continuing to communicate his love for her and for life.
The U.S. Food and Drug Administration said Tuesday it has granted accelerated approval to Biogen Inc.’s torferson, a treatment for a rare form of amyotrophic lateral sclerosis, or ALS.
The accelerated program is used to approve drugs for serious conditions that have an unmet medical need, where a drug is shown to have an effect on an endpoint that is reasonably likely to predict a clinical benefit to patients.
TUESDAY, Nov. 15, 2022 (HealthDay News) – Singer Roberta Flack has the incurable disease ALS and can’t sing, but she plans to stay active on other projects, her manager said Monday.
Flack, 85, is a Grammy winner best known for hits that include “Killing Me Softly With His Song” and “The First Time Ever I Saw Your Face.”
Born in North Carolina and raised in Virginia, Flack became a star when Clint Eastwood used one of her songs in his 1971 movie “Play Misty for Me,” the Associated Press reported.
Her ALS, also called Lou Gehrig’s disease, “has made it impossible to sing and not easy to speak,” manager Suzanne Koga said in a statement to the AP. “But it will take a lot more than ALS to silence this icon.”
Amyotrophic lateral sclerosis (ALS) is a rare neurological disease that damages brain cells that control voluntary muscle movements such as chewing, talking and walking. There is no effective treatment to halt or reverse progression of the disease.
Flack’s ongoing projects include the documentary “Roberta,” debuting later this week at a New York City film festival. The movie, directed by Antonino D’Ambrosio, will also air on Jan. 24 on PBS, the AP reported.
She also plans to publish a children’s book co-written with Tonya Bolden, the AP reported. “The Green Piano: How Little Me Found Music,” will be published in January.
“I have long dreamed of telling my story to children about that first green piano that my father got for me from the junkyard in the hope that they would be inspired to reach for their dreams,” Flack was quoted as saying in the release. “I want them to know that dreams can come true with persistence, encouragement from family and friends, and most of all belief in yourself.”
Flack is a classically trained musician who won a full ride to Howard University at age 15. Her parents were pianists.
The 50th anniversary of her fourth album, “Killing Me Softly,” in 2023 will include a reissue, the AP reported.
Flack also “plans to stay active in her musical and creative pursuits” through her foundation, Koga said.
More information
The National Institute of Neurological Disorders and Stroke has more on ALS.
While Zac Brown Band guitarist and singer John Driskell Hopkins has been on tour with the Grammy-award-winning country music group, he’s been facing a battle behind the scenes: a recent diagnosis with ALS. CBS News correspondent Jan Crawford sat down with the musician to learn more about his fight to raise awareness of the debilitating disease.
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A new set of rich Answer ALS project data is now available through the Answer ALS Data Portal
Press Release –
updated: May 13, 2020
NEW ORLEANS, May 13, 2020 (Newswire.com)
– A new set of Answer ALS project data is now available through the Answer ALS Data Portal. The release is a milestone not only for the program but for the field of ALS research in general. This is the first time that data from multiple biological assessments (so-called “multi-omics”) have been combined with clinical data and been publicly released. The datasets, which include clinical, transcriptomic, and epigenomic sequence data, are all derived from individual Answer ALS study participants. The release also incorporates data portal updates to help with downstream analysis.
“We are really excited to release this first large data set as the core product of the Answer ALS program,” said Dr. Jeffrey Rothstein, Director, Robert Packard Center for ALS Research at Johns Hopkins University, School of Medicine. “This first huge set of biological and clinical data sets the stage for researchers around the world to begin to tackle the challenge of understanding ALS subgroups, real human-relevant pathways and the tools to find individuals’ disease-specific drugs.” Rothstein continued, “Representing 100 of the1,000 ALS patient participants in the study, this data can be the foundation for companies and labs to earnestly tackle ALS biology — and it’s only the first 10% of what will continuously be released as it’s available.”
The newly released epigenomic and transcriptomic data complement whole-genome sequencing and clinical data that was previously released for the same study participants. Together, the datasets will help researchers compare the genetic backgrounds between case and control populations. Having these comparisons is important to understand the differences in those with and without ALS and, notably, will also help researchers identify potential differences between sub-groups of ALS patients.
Ed Rapp, Answer ALS Advisory Board Chair and person living with ALS, said, “Any great breakthrough is like a game of dominoes. You have to get the first domino to fall and once you do, it leads you down a path to success.” Rapp added, “Tipping the first domino was deploying exponential computing capabilities that allow large data storage, genetic sequencing in an hour, and deeper machine learning into the disease. That effort will then facilitate all other dominoes by the discovery of ALS subgroups and ultimately treatments or a cure.”
To learn more about Answer ALS, please visit answerals.org. To search the data, please visit the Answer ALS Data Portal: data.answerals.org. The next release will include transcriptomic, epigenomic, and proteomic data produced from stem cell-derived motor neurons or “virtual biopsies” of individual study participants. This release is planned for Summer 2020.
Media Contact: Clare Durrett Phone: 504.450.4677 Email: Clare@AnswerALS.org
