Actor Eric Dane, best known for his role in Grey’s Anatomy, has died at the age of 53 after battling ALS. Dane’s passing has drawn tributes from fans and the entertainment industry, marking the loss of a prominent television star. He was widely recognised for his performances across television and film.


Eric Dane Dies At 53: Grey’s Anatomy Star Passes Away After ALS Battle | WION

Actor Eric Dane, widely known for playing the charming Dr Mark Sloan in TV medical drama Grey’s Anatomy, died on Thursday at the age of 53. In April 2025, the popular TV actor revealed that he had been diagnosed with amyotrophic lateral sclerosis (ALS).&nbsp;On Thursday, Dane’s family released a statement and said that the actor died peacefully earlier in the afternoon, surrounded by close friends, his wife, and daughters, Billie and Georgia. The statement read, "With heavy hearts, we share that Eric Dane passed on Thursday afternoon following a courageous battle with ALS. 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."&nbsp;Dane was vocal about his ALS diagnosis. Last year, he revealed his diagnosis and stated, “I am grateful to have my loving family by my side as we navigate this next chapter."&nbsp;&nbsp;Also see: <a href="https://www.wionews.com/entertainment/hollywood/eric-dane-best-known-for-grey-s-anatomy-and-euphoria-dies-at-53-condolences-pour-in-1771554121281">Eric Dane, best known for Grey's Anatomy and Euphoria, dies at 53</a>&nbsp;Months later, in June 2025, Dane had revealed that he had lost functions in his right arm. While the actor continued raising ALS awareness, the disease spread fast and eventually claimed his life 10 months later.Dane’s death had come as a shock to many, despite everyone knowing that ALS is fatal.&nbsp;Dane’s death has brought back focus on ALS and how fast it can progress, leading to death.&nbsp;WION spoke to Dr Dr Khushbu Goel, Head &amp; Consultant - Stroke Care Programme &amp; Management, Neurology, Manipal Hospitals, Dwarka, New Delhi, and asked about the causes, symptoms of the disease, and preventive measures that one can take if diagnosed.&nbsp;<h2>What is ALS?</h2>ASL or Amyotrophic Lateral Sclerosis, is a progressive, fatal neurodegenerative disease that destroys motor neurons in the brain and spinal cord, causing loss of voluntary muscle control. It mainly includes the motor neurons, which control voluntary muscles located in the brain and spinal cord. When these neurons die, the brain can no longer send signals to muscles, leading to muscle weakness, loss of voluntary movement, and eventual paralysis.&nbsp; &nbsp;<h2>What causes ALS?</h2>Most cases of ALS have no known cause and are known as sporadic. Experts have stated that both genetic and environmental factors often lead to the onset of ALS. According to a report in the Mayo Clinic, 5–10% of ALS cases have a known genetic cause and are often linked to a family history of ALS; such cases are known as familial ALS or hereditary ALS.&nbsp;Also see: <a href="https://www.wionews.com/photos/grey-s-anatomy-to-x-men-8-must-watch-films-and-shows-featuring-eric-dane-1771556685362">Grey's Anatomy to X-Men: 8 Must-watch films and shows featuring Eric Dane</a>&nbsp;There is no cure for ALS so far. Once diagnosed, the goal of treatment is aimed at slowing the progress of the disease. &nbsp;It is fatal, with an average survival time of 3 to 5 years after symptoms start, though some live 10 years or more. The progression of the treatment depends on early detection and differs from person ti person.&nbsp;&nbsp;<h2>Symptoms of ALS</h2>According to Dr Goel, “early symptoms of ALS may include muscle spasms and rigidity, arm, leg, or hand weakness, trouble holding objects or walking, difficulty speaking or swallowing. As the disease progresses over time, people may also experience severe muscle weakness and paralysis, loss of the ability to speak, walk, or perform daily tasks, and breathing issues due to involvement of the respiratory muscles. However, as it may lead to physical decline, sensation typically remains normal, and cognitive functions are usually preserved.”&nbsp;&nbsp;<h2>Is it fatal? Does it spread aggressively once diagnosed?</h2>“Yes, ALS can be fatal,” says Dr Goel, and adds that “the progression varies among patients. The development of the disease depends on the site of onset, age, sex, genetic factors, and respiratory function. Limb-onset ALS, which begins in the arms or legs, generally develops more slowly, while bulbar-onset ALS, affecting speech and swallowing, tends to advance more rapidly. Early involvement of the respiratory muscles is associated with a poorer diagnosis. ”

Goel adds that survival rates range from two to five years after diagnosis, but with careful and comprehensive management, some patients may live for ten years or longer.&nbsp;It is important to clarify that ALS is not a contagious disease and does not spread among individuals.<h2>Is there any way to take precautions or safeguard oneself?</h2>Nutrition: It is essential to have proper nutrition in ALS to avoid weight loss and muscle atrophy. A high-calorie and high-protein diet is necessary to fulfil the energy requirements. Drinking plenty of water is also important to support digestion, circulation, and overall health.&nbsp;Physical Activity: Exercise must be done in a balanced manner to prevent muscle overuse. Vigorous exercise can worsen muscle fatigue and weakness. Gentle and supervised physiotherapy can also help maintain mobility and flexibility.&nbsp;Respiratory Care: Breathing function should be checked periodically because weakness of the respiratory muscles is a significant concern in ALS patients. If symptoms like shortness of breath, difficulty breathing when lying flat, a weak cough, or morning headaches occur, medical advice should be immediately sought. Early treatment for breathing difficulties can greatly improve survival and comfort.&nbsp;Psychological Support: Living with ALS can be emotionally trying for both the patient and the caregiver. Counselling and mental health support can help cope with anxiety, depression, and emotional distress. Support groups can help patients and their families connect with others who have similar experiences and provide valuable information on how to improve their quality of life.

Grey's Anatomy star Eric Dane passed away on Thursday after a long battle with ALS. The actor had first announced about his diagnosis in April 2025 and 10 months on passed away due to the fatal disease. 

Actor Eric Dane, widely known for playing the charming Dr Mark Sloan in TV medical drama Grey’s Anatomy, died on Thursday at the age of 53. In April 2025, the popular TV actor revealed that he had been diagnosed with amyotrophic lateral sclerosis (ALS). On Thursday, Dane’s family released a statement and said that the actor died peacefully earlier in the afternoon, surrounded by close friends, his wife, and daughters, Billie and Georgia. The statement read, "With heavy hearts, we share that Eric Dane passed on Thursday afternoon following a courageous battle with ALS. 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." Dane was vocal about his ALS diagnosis. Last year, he revealed his diagnosis and stated, “I am grateful to have my loving family by my side as we navigate this next chapter." Also see: Eric Dane, best known for Grey's Anatomy and Euphoria, dies at 53 Months later, in June 2025, Dane had revealed that he had lost functions in his right arm. While the actor continued raising ALS awareness, the disease spread fast and eventually claimed his life 10 months later. Dane’s death had come as a shock to many, despite everyone knowing that ALS is fatal. Dane’s death has brought back focus on ALS and how fast it can progress, leading to death. WION spoke to Dr Dr Khushbu Goel, Head & Consultant - Stroke Care Programme & Management, Neurology, Manipal Hospitals, Dwarka, New Delhi, and asked about the causes, symptoms of the disease, and preventive measures that one can take if diagnosed. What is ALS? ASL or Amyotrophic Lateral Sclerosis, is a progressive, fatal neurodegenerative disease that destroys motor neurons in the brain and spinal cord, causing loss of voluntary muscle control. It mainly includes the motor neurons, which control voluntary muscles located in the brain and spinal cord. When these neurons die, the brain can no longer send signals to muscles, leading to muscle weakness, loss of voluntary movement, and eventual paralysis. What causes ALS? Most cases of ALS have no known cause and are known as sporadic. Experts have stated that both genetic and environmental factors often lead to the onset of ALS. According to a report in the Mayo Clinic, 5–10% of ALS cases have a known genetic cause and are often linked to a family history of ALS; such cases are known as familial ALS or hereditary ALS. Also see: Grey's Anatomy to X-Men: 8 Must-watch films and shows featuring Eric Dane There is no cure for ALS so far. Once diagnosed, the goal of treatment is aimed at slowing the progress of the disease. It is fatal, with an average survival time of 3 to 5 years after symptoms start, though some live 10 years or more. The progression of the treatment depends on early detection and differs from person ti person. Symptoms of ALS According to Dr Goel, “early symptoms of ALS may include muscle spasms and rigidity, arm, leg, or hand weakness, trouble holding objects or walking, difficulty speaking or swallowing. As the disease progresses over time, people may also experience severe muscle weakness and paralysis, loss of the ability to speak, walk, or perform daily tasks, and breathing issues due to involvement of the respiratory muscles. However, as it may lead to physical decline, sensation typically remains normal, and cognitive functions are usually preserved.” Is it fatal? Does it spread aggressively once diagnosed? “Yes, ALS can be fatal,” says Dr Goel, and adds that “the progression varies among patients. The development of the disease depends on the site of onset, age, sex, genetic factors, and respiratory function. Limb-onset ALS, which begins in the arms or legs, generally develops more slowly, while bulbar-onset ALS, affecting speech and swallowing, tends to advance more rapidly. Early involvement of the respiratory muscles is associated with a poorer diagnosis. ”

Grey's Anatomy star Eric Dane passed away on Thursday after a long battle with ALS. The actor had first announced about his diagnosis in April 2025 and 10 months on, he passed away due to the fatal disease.&nbsp;

What is ALS disease that led to Grey's Anatomy star Eric Dane's death? Know about causes, symptoms and more

The Ice Bucket Challenge that went viral in 2014, raising hundreds of millions of dollars helped identify a new gene behind the neurodegenerative disease ALS or Lou Gehrig's disease.

10 years of Ice Bucket Challenge: Event to renew interest in social media campaigns

Kenneth Mitchell Captain Marvel:&nbsp;Actor Kenneth Mitchell, best known for his roles in Star Trek: Discovery and Captain Marvel is dead. Mitchell died on Saturday from ALS (amyotrophic lateral sclerosis) complications, several reports stated. He was 49. 
 
"For five and a half years Ken faced a series of awful challenges from ALS. And in truest Ken fashion, he managed to rise above each one with grace and commitment to living a full and joyous life in each moment," a statement read, which was shared across his social media platforms. 
 
"He lived by the principles that each day is a gift and that we never walk alone. His life is a shining example of how full one can be when you live with love, compassion, humour, inclusion, and community. Ken was an inspirational work of art to all the hearts he touched."

Kenneth was born in Toronto, Canada, on November&nbsp;25, 1974.&nbsp;The actor was known for being "a giver, a listener, a sentimentalist, and an excellent observer of his surroundings. One of his most endearing qualities as a friend is that Ken loved to watch others shine. He was a conductor of connecting friends together and thoroughly enjoyed prompting a good story," the statement said.

"And boy oh boy did he love to laugh. He absolutely loved to laugh. Ken had a keen passion and detailed eye for beauty in the arts. He thrived creatively which could be easily seen in his architecture, graphic design, acting, photography, writing, broad love of music, and throughout his home in Studio City, California." 
 
"Ken is forever grateful for the massive amounts of love and endless support he received from his community along this journey. Especially the courage, resilience, and strength displayed from his extraordinary wife, family, and friends," it added. 
 
Mitchell is survived by wife Susan and two children, Lilah and Kallum

<h2>Roles Kenneth Mitchell played on screen (Captain Marvel)</h2>

Mitchell portrayed Klingons Kol, Kol-Sha and Tenavik on Star Trek: Discovery.&nbsp;He also voiced several characters on the animated series, Star Trek: Lower Decks. 
 
"I think it, over time, became the theme of us accepting this with grace," he had said in an interview about the illness. "Trying to see the beauty in it, in a way. I’ll never forget, one of my Star Trek&nbsp;co-stars told me, because they had dealt with some trying times with illnesses and stuff, and I remember them communicating to me, saying, ‘You have a choice. You can look at this in many different ways, but maybe try to look at this like a gift where you get to experience life in a way that most people don’t.'"

<h2>What is ALS?</h2>

According to the National Institute of Neurological Disorders and Stroke (NIH), Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease, is a rare neurological disease that affects motor neurons—those nerve cells in the brain and spinal cord that control voluntary muscle movement.&nbsp; 
 
The cause is unknown and symptoms can vary. Muscle weakness that progressively worsens is a common symptom for most suffering from this disorder. There is currently no cure for the disease and the progression of symptoms varies in each case. 
 
Early symptoms include muscle twitches in the arm, leg, shoulder, or tongue, muscle cramps, tight and stiff muscles (spasticity), muscle weakness affecting an arm, a leg, the neck, or diaphragm, slurred and nasal speech and difficulty chewing or swallowing.

Kenneth Mitchell Captain Marvel: Actor Kenneth Mitchell, best known for his roles in Star Trek: Discovery and Captain Marvel is dead. Mitchell died on Saturday from ALS (amyotrophic lateral sclerosis) complications, several reports stated.

Kenneth Mitchell Captain Marvel: Actor Kenneth Mitchell, best known for his roles in Star Trek: Discovery and Captain Marvel is dead. Mitchell died on Saturday from ALS (amyotrophic lateral sclerosis) complications, several reports stated. He was 49. "For five and a half years Ken faced a series of awful challenges from ALS. And in truest Ken fashion, he managed to rise above each one with grace and commitment to living a full and joyous life in each moment," a statement read, which was shared across his social media platforms. "He lived by the principles that each day is a gift and that we never walk alone. His life is a shining example of how full one can be when you live with love, compassion, humour, inclusion, and community. Ken was an inspirational work of art to all the hearts he touched." Kenneth was born in Toronto, Canada, on November 25, 1974. The actor was known for being "a giver, a listener, a sentimentalist, and an excellent observer of his surroundings. One of his most endearing qualities as a friend is that Ken loved to watch others shine. He was a conductor of connecting friends together and thoroughly enjoyed prompting a good story," the statement said. "And boy oh boy did he love to laugh. He absolutely loved to laugh. Ken had a keen passion and detailed eye for beauty in the arts. He thrived creatively which could be easily seen in his architecture, graphic design, acting, photography, writing, broad love of music, and throughout his home in Studio City, California." "Ken is forever grateful for the massive amounts of love and endless support he received from his community along this journey. Especially the courage, resilience, and strength displayed from his extraordinary wife, family, and friends," it added. Mitchell is survived by wife Susan and two children, Lilah and Kallum Roles Kenneth Mitchell played on screen (Captain Marvel) Mitchell portrayed Klingons Kol, Kol-Sha and Tenavik on Star Trek: Discovery. He also voiced several characters on the animated series, Star Trek: Lower Decks. "I think it, over time, became the theme of us accepting this with grace," he had said in an interview about the illness. "Trying to see the beauty in it, in a way. I’ll never forget, one of my Star Trek co-stars told me, because they had dealt with some trying times with illnesses and stuff, and I remember them communicating to me, saying, ‘You have a choice. You can look at this in many different ways, but maybe try to look at this like a gift where you get to experience life in a way that most people don’t.'" What is ALS? According to the National Institute of Neurological Disorders and Stroke (NIH), Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease, is a rare neurological disease that affects motor neurons—those nerve cells in the brain and spinal cord that control voluntary muscle movement. The cause is unknown and symptoms can vary. Muscle weakness that progressively worsens is a common symptom for most suffering from this disorder. There is currently no cure for the disease and the progression of symptoms varies in each case. Early symptoms include muscle twitches in the arm, leg, shoulder, or tongue, muscle cramps, tight and stiff muscles (spasticity), muscle weakness affecting an arm, a leg, the neck, or diaphragm, slurred and nasal speech and difficulty chewing or swallowing.

Kenneth Mitchell, best known for his role in Star Trek: Discovery, dead at 49

Hollywood actor Sandra Bullock's longtime partner Bryann Randall has died at the age of 57 after a three-year-long battle with ALS. Bullock first met Randall in her son's birthday in January 2015. They made their relationship public later that year.

Sandra Bullock's partner Bryann Randall dies after battle with ALS; What is ALS?

Hollywood actress Sandra Bullock lost her long-time partner Bryan Randall on August 5. Randall was suffering from a disease called Amyotrophic Lateral Sclerosis (ALS). The Oscar-winning actress met Randall, a model-turned-photographer at her son Louis’ birthday party, where he was hired to capture the event in 2015.&nbsp;

Together, Bullock and Randall were parents to three children - Bullock’s adopted kids Louis Bardo and Laila, and a daughter Randall had from a previous relationship.&nbsp;

Also Read |&nbsp;<a href="https://www.wionews.com/entertainment/hollywood/news-rejoice-travis-scott-fans-singers-utopia-debuts-with-second-biggest-streaming-for-2023-623369">Rejoice Travis Scott fans! Singer's Utopia debuts with second biggest streaming for 2023</a>

Randall was diagnosed with ALS disease in 2020, but his journey with the disease began several years ago. He remained steadfast in his decision to maintain a low profile about himself and his disease.&nbsp;

<h2>What is ALS?</h2>

According to the National Institute of Neurological Disorders and Stroke (NIH), Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease, is a rare neurological disease that affects motor neurons—those nerve cells in the brain and spinal cord that control voluntary muscle movement.&nbsp;

The disease is progressive, meaning the symptoms get worse over time. ALS has no cure and there is no effective treatment to reverse its progression.

Also Read |&nbsp;<a href="https://www.wionews.com/entertainment/hip-hop-at-50-unleashing-a-cultural-revolution-that-transcends-time-and-borders-623384">Hip Hop at 50: Unleashing a cultural revolution that transcends time and borders</a>

ALS is a type of motor neuron disease. As motor neurons degenerate and die, they stop sending messages to the muscles, which causes the muscles to weaken, start to twitch (fasciculation), and waste away (atrophy). Eventually, the brain loses its ability to initiate and control voluntary movements.&nbsp;

<h2>Early signs and symptoms of ALS</h2>

Early symptoms include:

Muscle twitches in the arm, leg, shoulder, or tongue

Muscle cramps

Tight and stiff muscles (spasticity)

Muscle weakness affecting an arm, a leg, the neck, or diaphragm

Slurred and nasal speech

Difficulty chewing or swallowing

As the disease progresses, muscle weakness and atrophy spread to other parts of your body.

<h2>ALS: Who all are at risk?</h2>

Per sources, although anyone can suffer from ALS, the risk is high for people who are 60 to 85 years old. According to NIH, males are slightly more likely to develop ALS.

Also Read |&nbsp;<a href="https://www.wionews.com/entertainment/who-is-tory-lanez-canadian-rappers-sentence-for-shooting-megan-thee-stallion-delayed-623392">Who is Tory Lanez? Canadian rapper's sentence for shooting Megan Thee Stallion delayed</a>

The race and ethnicity of the person also play a role. A report by MayoClinic states that Caucasians and non-Hispanics are most likely to develop the disease.

<h2>There’s no treatment to reverse ALS</h2>

Unfortunately, the treatments available for ALS can only make living with the disease easier and don't offer a cure.

The management of this neurological ailment includes lifestyle changes, rehabilitation, physical and occupational therapy, communication support, breathing support, and a few medicines that mitigate the symptoms.

(With inputs from agencies)

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Hollywood actress Sandra Bullock lost her long-time partner Bryan Randall on August 5. Randall was suffering from a disease called Amyotrophic Lateral Sclerosis (ALS).

Hollywood actress Sandra Bullock lost her long-time partner Bryan Randall on August 5. Randall was suffering from a disease called Amyotrophic Lateral Sclerosis (ALS). The Oscar-winning actress met Randall, a model-turned-photographer at her son Louis’ birthday party, where he was hired to capture the event in 2015. Together, Bullock and Randall were parents to three children - Bullock’s adopted kids Louis Bardo and Laila, and a daughter Randall had from a previous relationship. Also Read | Rejoice Travis Scott fans! Singer's Utopia debuts with second biggest streaming for 2023 Randall was diagnosed with ALS disease in 2020, but his journey with the disease began several years ago. He remained steadfast in his decision to maintain a low profile about himself and his disease. What is ALS? According to the National Institute of Neurological Disorders and Stroke (NIH), Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease, is a rare neurological disease that affects motor neurons—those nerve cells in the brain and spinal cord that control voluntary muscle movement. The disease is progressive, meaning the symptoms get worse over time. ALS has no cure and there is no effective treatment to reverse its progression. Also Read | Hip Hop at 50: Unleashing a cultural revolution that transcends time and borders ALS is a type of motor neuron disease. As motor neurons degenerate and die, they stop sending messages to the muscles, which causes the muscles to weaken, start to twitch (fasciculation), and waste away (atrophy). Eventually, the brain loses its ability to initiate and control voluntary movements. Early signs and symptoms of ALS Early symptoms include: Muscle twitches in the arm, leg, shoulder, or tongue Muscle cramps Tight and stiff muscles (spasticity) Muscle weakness affecting an arm, a leg, the neck, or diaphragm Slurred and nasal speech Difficulty chewing or swallowing As the disease progresses, muscle weakness and atrophy spread to other parts of your body. ALS: Who all are at risk? Per sources, although anyone can suffer from ALS, the risk is high for people who are 60 to 85 years old. According to NIH, males are slightly more likely to develop ALS. Also Read | Who is Tory Lanez? Canadian rapper's sentence for shooting Megan Thee Stallion delayed The race and ethnicity of the person also play a role. A report by MayoClinic states that Caucasians and non-Hispanics are most likely to develop the disease. There’s no treatment to reverse ALS Unfortunately, the treatments available for ALS can only make living with the disease easier and don't offer a cure. The management of this neurological ailment includes lifestyle changes, rehabilitation, physical and occupational therapy, communication support, breathing support, and a few medicines that mitigate the symptoms. (With inputs from agencies) WATCH WION LIVE HERE You can now write for wionews.com and be a part of the community. Share your stories and opinions with us here.

What is ALS, the disease that claimed life of Sandra Bullock's partner?

Patients with life-threatening diagnoses and limited treatment options have long struggled with the question of who will pay when they attempt to obtain experimental, unapproved treatments.

Drug manufacturers have long been tasked with financing so-called compassionate use, despite the fact that many of them are unable or unwilling to provide their medications free of charge to terminally ill patients.

Lou Gehrig's disease sufferers have discovered an extraordinary remedy after years of petitioning Congress: making the federal government pay.

According to a recent law, the National Institutes of <a href="https://www.wionews.com/world/losses-endured-and-social-isolation-during-covid-might-have-altered-peoples-personalities-study-says-520863">Health</a> will start spending roughly $25 million to sign up people for open access, or "compassionate use," programmes of unapproved medications. Patients will have access to a sugar-based injection called trehalose in the initial phase, which was disclosed on Friday.

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The programme only accepts people who are ineligible for regular drug trials. To learn more about the therapy and their underlying condition, amyotrophic lateral sclerosis, or ALS, data on their progress must be gathered.

The project blurs the distinction between treatment and research, and it forces the NIH to pay for experimental treatments in studies that might only produce sparse data. While it provides ALS sufferers with a crucial new alternative, it also raises the potential that scarce federal funds might eventually be used for more experimental treatments for other diseases.

“We don’t typically expect the government to pay for things until we know they work,” said Holly Fernandez Lynch, a University of Pennsylvania bioethicist. “But the system we have in this country relies on drug companies to develop our drugs, and private companies are not in the business of providing their products for free.”

Fernandez Lynch and numerous other specialists welcome the new strategy as an inventive response to the problems faced by ALS patients, who normally live three to five years after experiencing their first symptoms. The illness kills the nerve cells required for walking, talking, and eventually breathing.

According to researchers, up to 90% of ALS patients are ineligible for conventional clinical trials, usually because their disease has advanced too far to show significant therapy benefits. Even qualified patients have to fight for access.&nbsp;

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Most businesses in their industry, according to ALS sufferers, are small startups unable to cover such expenses. Drug manufacturers may refuse access for a variety of additional reasons, such as worries that unforeseen safety issues would harm their prospects of receiving clearance.

The great majority of the NIH's $45 billion funding is allocated to early-stage research aimed at determining the causes, treatments, and prospective remedies for diseases.

One crucial component of the new approach, along with numerous biological indicators of ALS, is tracking drug safety. But because patients won't be matched to a placebo group, the gold-standard method for doing medical research, it is unclear that the programme will be able to determine whether the treatments are genuinely helping.

(With inputs from agencies)

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Patients with life-threatening diagnoses and limited treatment options have long struggled with the question of who will pay when they attempt to obtain experimental, unapproved treatments.

Patients with life-threatening diagnoses and limited treatment options have long struggled with the question of who will pay when they attempt to obtain experimental, unapproved treatments. Drug manufacturers have long been tasked with financing so-called compassionate use, despite the fact that many of them are unable or unwilling to provide their medications free of charge to terminally ill patients. Lou Gehrig's disease sufferers have discovered an extraordinary remedy after years of petitioning Congress: making the federal government pay. According to a recent law, the National Institutes of Health will start spending roughly $25 million to sign up people for open access, or "compassionate use," programmes of unapproved medications. Patients will have access to a sugar-based injection called trehalose in the initial phase, which was disclosed on Friday. Also read | Japan panel advises legalising cannabis-based medicines The programme only accepts people who are ineligible for regular drug trials. To learn more about the therapy and their underlying condition, amyotrophic lateral sclerosis, or ALS, data on their progress must be gathered. The project blurs the distinction between treatment and research, and it forces the NIH to pay for experimental treatments in studies that might only produce sparse data. While it provides ALS sufferers with a crucial new alternative, it also raises the potential that scarce federal funds might eventually be used for more experimental treatments for other diseases. “We don’t typically expect the government to pay for things until we know they work,” said Holly Fernandez Lynch, a University of Pennsylvania bioethicist. “But the system we have in this country relies on drug companies to develop our drugs, and private companies are not in the business of providing their products for free.” Fernandez Lynch and numerous other specialists welcome the new strategy as an inventive response to the problems faced by ALS patients, who normally live three to five years after experiencing their first symptoms. The illness kills the nerve cells required for walking, talking, and eventually breathing. According to researchers, up to 90% of ALS patients are ineligible for conventional clinical trials, usually because their disease has advanced too far to show significant therapy benefits. Even qualified patients have to fight for access. Also read | Weight exercise can lower risk of premature death: Study Most businesses in their industry, according to ALS sufferers, are small startups unable to cover such expenses. Drug manufacturers may refuse access for a variety of additional reasons, such as worries that unforeseen safety issues would harm their prospects of receiving clearance. The great majority of the NIH's $45 billion funding is allocated to early-stage research aimed at determining the causes, treatments, and prospective remedies for diseases. One crucial component of the new approach, along with numerous biological indicators of ALS, is tracking drug safety. But because patients won't be matched to a placebo group, the gold-standard method for doing medical research, it is unclear that the programme will be able to determine whether the treatments are genuinely helping. (With inputs from agencies) WATCH WION LIVE HERE:

NIH to fund experimental ALS drugs under patient-backed law

A 36-year-old unidentified man, who is fully paralysed and suffering from neurological disease amyotrophic lateral sclerosis (ALS) was able to communicate in full sentences with his family after receiving microchip implants in his brain.&nbsp;

ALS, in its final stages, can bring extreme isolation as people lose control of their muscles and in most cases, communication may become impossible.&nbsp;

As per a study published in the journal Nature Communications this week, the German man, who is conscious and cognitively able but in a "complete" locked-in state was able to form sentences with the help of an implanted device that reads his brain signals.&nbsp;

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Mariska Vansteensel, who is a brain-computer interface researcher at the University Medical Center Utrecht, said, "People have really doubted whether this was even feasible." Vansteensel was not involved in the study.&nbsp;

Reinhold Scherer, a neural engineer at the University of Essex, weighed in on the development and said that if the new spelling system proves reliable for all people who are completely locked in, it might allow thousands of people to reconnect to their families and care teams.&nbsp;

Part of the study wrote, researchers implanted two 64 microelectrode arrays in the supplementary and primary motor cortex of the man.&nbsp;

The patient modulated neural firing rates based on auditory feedback and he used this strategy to select letters one at a time to form words and phrases to communicate his needs and experiences.&nbsp;

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The research says that one day after the implantation, attempts were initiated to establish communication.&nbsp;

The man was asked to use his previously effective communication strategy employing eye movements to respond to questions with known "yes" and "no" answers.&nbsp;

It did not result in a classifiable neural signal, no difference in spike rate and multi-unit-activity (MUA).&nbsp;

After several attempts, the communication strategy was changed on the 86th day after implantation.&nbsp;

The patient was provided auditory feedback of neural activity by mapping a spike rate metric (SRM) for one or more channels to the frequency of an auditory feedback tone.&nbsp;

The patient was able to modulate the sound tone on his first attempt, later he could modulate the neural firing rate and was able to use the method to select letters and to free spell.&nbsp;

He made dozens of sentences at a painstaking rate of about one character per minute: "Goulash soup and sweet pea soup." "I would like to listen to the album by Tool loud." "I love my cool son."

A 36-year-old unidentified man, who is fully paralysed and suffering from neurological disease amyotrophic lateral sclerosis (ALS) was able to communicate in full sentences with his family after receiving microchip implants in his brain.

A 36-year-old unidentified man, who is fully paralysed and suffering from neurological disease amyotrophic lateral sclerosis (ALS) was able to communicate in full sentences with his family after receiving microchip implants in his brain. ALS, in its final stages, can bring extreme isolation as people lose control of their muscles and in most cases, communication may become impossible. As per a study published in the journal Nature Communications this week, the German man, who is conscious and cognitively able but in a "complete" locked-in state was able to form sentences with the help of an implanted device that reads his brain signals. ALSO READ | What do those meowing and neighing mean? Will artificial intelligence tell us how animals communicate? Mariska Vansteensel, who is a brain-computer interface researcher at the University Medical Center Utrecht, said, "People have really doubted whether this was even feasible." Vansteensel was not involved in the study. Reinhold Scherer, a neural engineer at the University of Essex, weighed in on the development and said that if the new spelling system proves reliable for all people who are completely locked in, it might allow thousands of people to reconnect to their families and care teams. Part of the study wrote, researchers implanted two 64 microelectrode arrays in the supplementary and primary motor cortex of the man. The patient modulated neural firing rates based on auditory feedback and he used this strategy to select letters one at a time to form words and phrases to communicate his needs and experiences. ALSO READ | Turn garbage into gold: UK's Royal Mint planning to extract precious metals from e-waste The research says that one day after the implantation, attempts were initiated to establish communication. The man was asked to use his previously effective communication strategy employing eye movements to respond to questions with known "yes" and "no" answers. It did not result in a classifiable neural signal, no difference in spike rate and multi-unit-activity (MUA). After several attempts, the communication strategy was changed on the 86th day after implantation. The patient was provided auditory feedback of neural activity by mapping a spike rate metric (SRM) for one or more channels to the frequency of an auditory feedback tone. The patient was able to modulate the sound tone on his first attempt, later he could modulate the neural firing rate and was able to use the method to select letters and to free spell. He made dozens of sentences at a painstaking rate of about one character per minute: "Goulash soup and sweet pea soup." "I would like to listen to the album by Tool loud." "I love my cool son."

'I love my cool son': Brain implant helps fully paralysed man to spell out thoughts

An American man who helped drive the global phenomenon known as the Ice Bucket Challenge to tackle a deadly neurodegenerative disease has died at the age of 37, his team said Sunday.

Patrick Quinn, from New York state, was diagnosed with ALS, also known as Lou Gehrig's disease, in 2013.

"It is with great sadness that we must share the passing of Patrick early this morning," his team wrote in a post in Quinn's ALS advocacy Facebook group, "Quinn for the Win."

"We will always remember him for his inspiration and courage in his tireless fight against ALS."

Also read|&nbsp;<a href="https://www.wionews.com/world/life-is-short-jetman-vince-reffet-dies-in-a-training-exercise-343879" hreflang="en">'Life is short': Jetman Vince Reffet dies in a training exercise</a>

Quinn did not start the Ice Bucket Challenge, which took social media by storm in 2014, but he and his family and friends helped it become a global phenomenon.

Millions took up the challenge, which involved dousing themselves with a bucket of ice cold water and posting the video online, before making a donation to medical research and daring others to do the same.&nbsp;

A galaxy of celebrities, high-profile personalities and entire sports teams took part in the challenge, including Tom Cruise, Steven Spielberg, Bill Gates and even former US president George W. Bush.

The campaign has reportedly raised $220 million to fund research into ALS, whose sufferers' bodies slowly shut down as their nervous systems degenerate.

The condition, officially known as amyotrophic lateral sclerosis, is also known as Lou Gehrig's disease after a baseball player who died of it in 1941.

Pete Frates, a former US college baseball player diagnosed with ALS who also inspired the ice bucket challenge, died last year at the age of 34.

An American man who helped drive the global phenomenon known as the Ice Bucket Challenge to tackle a deadly neurodegenerative disease has died at the age of 37, his team said Sunday.

An American man who helped drive the global phenomenon known as the Ice Bucket Challenge to tackle a deadly neurodegenerative disease has died at the age of 37, his team said Sunday. Patrick Quinn, from New York state, was diagnosed with ALS, also known as Lou Gehrig's disease, in 2013. "It is with great sadness that we must share the passing of Patrick early this morning," his team wrote in a post in Quinn's ALS advocacy Facebook group, "Quinn for the Win." "We will always remember him for his inspiration and courage in his tireless fight against ALS." Also read| 'Life is short': Jetman Vince Reffet dies in a training exercise Quinn did not start the Ice Bucket Challenge, which took social media by storm in 2014, but he and his family and friends helped it become a global phenomenon. Millions took up the challenge, which involved dousing themselves with a bucket of ice cold water and posting the video online, before making a donation to medical research and daring others to do the same. A galaxy of celebrities, high-profile personalities and entire sports teams took part in the challenge, including Tom Cruise, Steven Spielberg, Bill Gates and even former US president George W. Bush. The campaign has reportedly raised $220 million to fund research into ALS, whose sufferers' bodies slowly shut down as their nervous systems degenerate. The condition, officially known as amyotrophic lateral sclerosis, is also known as Lou Gehrig's disease after a baseball player who died of it in 1941. Pete Frates, a former US college baseball player diagnosed with ALS who also inspired the ice bucket challenge, died last year at the age of 34.

US Ice Bucket Challenge activist dies aged 37

&#39;SpongeBob SquarePants&#39; creator Stephen Hillenburg said he has been diagnosed with motor neurone disease ALS, but has wished to carry on working with the popular animated show.

&ldquo;I wanted people to hear directly from me that I have been diagnosed with ALS,&rdquo; the statement published by Variety read. &ldquo;Anyone who knows me knows that I will continue to work on &lsquo;SpongeBob SquarePants&rsquo; and my other passions for as long as I am able. My family and I are grateful for the outpouring of love and support. We ask that our sincere request for privacy be honoured during this time.&rdquo;

&ldquo;Steve Hillenburg is a brilliant creator who brings joy to millions of fans,&rdquo; read a statement Nickelodeon issued. &ldquo;Our thoughts and support are with Steve and his family during this difficult time. Out of respect for their wishes for privacy, we will have no further comment.&rdquo;

People close to Hillenburg said he was diagnosed with the motor neurone disease recently. ALS is a debilitating disease, which affects the brain and the spinal cord.

Stephen Hawking is one of the people to have been suffering from the crippling disease.

(WION)

Stephen Hillenburg, however, intends to carry on working

'SpongeBob SquarePants' creator Stephen Hillenburg said he has been diagnosed with motor neurone disease ALS, but has wished to carry on working with the popular animated show. “I wanted people to hear directly from me that I have been diagnosed with ALS,” the statement published by Variety read. “Anyone who knows me knows that I will continue to work on ‘SpongeBob SquarePants’ and my other passions for as long as I am able. My family and I are grateful for the outpouring of love and support. We ask that our sincere request for privacy be honoured during this time.” “Steve Hillenburg is a brilliant creator who brings joy to millions of fans,” read a statement Nickelodeon issued. “Our thoughts and support are with Steve and his family during this difficult time. Out of respect for their wishes for privacy, we will have no further comment.” People close to Hillenburg said he was diagnosed with the motor neurone disease recently. ALS is a debilitating disease, which affects the brain and the spinal cord. Stephen Hawking is one of the people to have been suffering from the crippling disease. (WION)

'SpongeBob SquarePants' creator diagnosed with ALS

Social media, if used strategically, is one of the most powerful tool to communicate and engage with masses. While brand marketers&nbsp;are innovatively&nbsp;using&nbsp;the web&nbsp;to engage with&nbsp;potential customers, there are many&nbsp;who&nbsp;harnessed this impactful platform&nbsp;to raise attention and initiate action on social causes.&nbsp;Here, we talk about some majorly successful campaigns that used an out of the box approach of&nbsp;inducing&nbsp;a comic factor to grab attention of the masses. These campaigns, besides tickling audience&#39;s funny&nbsp;bone, also instigated a sense of responsibility in them&nbsp;to participate in a larger than life issue behind the humour.

Here are brilliant examples of comedy&nbsp;being used to convey serious messages:

<meta charset="utf-8" />

<h2>ALS Ice Bucket Challenge</h2>

 
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/qgqsgXSJ7g8" width="560"></iframe>

Source : Shine On Media

 
The ice bucket challenge was launched by the ALS association in 2014 to raise awareness about amyotrophic lateral sclerosis, a fatal brain disease that damages motor neurons.&nbsp;People poured a bucket of iced water over their heads in order to appeal for donations before nominating others to do the same. The campaign spread like wildfire over the internet with over 2.4 million entertaining videos circulating. Renowned personalities including Lady Gaga, Tom Cruise, Cristiano Ronaldo, Leonardo DiCaprio, Robert Downey Jr and Tom Cruise participated. The campaign raised over $100 million in the first month itself that was used to fund several research projects. One of these was Project MinE, where the researchers recently announced that they have identified a new gene associated with the disease, which experts say could lead to new treatment possibilities

&nbsp;

&nbsp;

<h2>Feeling Nuts</h2>

&nbsp;

<div class="ui-state-default" contenteditable="false"><img alt="" draggable="false" src="http://s.wionews.com/photos/jack-20160929042403.jpg" />
<div class="media-description">
Source : @realhughjackman via Twitter (Twitter)
</div>
<a class="close-mark close-div" href="javascript:void(0)" id="jqclosemark">&times;</a></div>

&nbsp;

Brothers and founders of Salter Brothers Entertainment, Simon and Andrew Salter were touched and inspired by the story of Wendy Gough, a woman who lost her son to testicular cancer only because he was too embarrassed to talk about it.

They launched the #FeelingNuts campaign where boys were to post a picture of crotch grabs to catch attention of males to check early symptoms of the disease.&nbsp;With support from celebrities like Hugh Jackman and Nick Jonas, the campaign reached 750 million people globally.

The &quot;simple and powerful message&quot; of Feeling Nuts has impressed the British&nbsp;health minister Norman Lamb, the Liberal Democrat MP for North Norfolk, who said &quot; we have to make sure as the government that the system is able to respond to those people who come forward as a result.&quot;

<h2> 
Save The Internet, By All India Backchod</h2>

 
<meta charset="utf-8" />

<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/mfY1NKrzqi0" width="560"></iframe>

Source : All India Bakchod 
 
All India Bakchod from India released a video - Save The Internet, that explained net neutrality and highlighted how telecom companies can change the internet usage scenario through a very basic and funny example. #SaveTheInternet took over Twitter trends with Bollywood stars like Shah Rukh Khan, Farhan Akhtar and Ayushmann Khurrana urging fans to support the cause. 
&nbsp;

<h2> 
Africa For Norway</h2>

&nbsp;

&nbsp;

<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/oJLqyuxm96k" width="560"></iframe>

Source : SAIH Norway 
 
A Norwegian group called Radi-Aid launched a video to request Africa to send radiators to Norway. The cause was the condition of freezing children during Norway&rsquo;s severely cold winter months. The humorous video has a serious message. Their effort is a serious critique of the Western media coverage that stereotypes underdeveloped nations .The point is that images of pitiable&nbsp;Africans are just as imprecise&nbsp;as the idea of helpless freezing Norwegians.

<h2> 
British Heart Foundation - Promoting Hands-Only CPR</h2>

&nbsp;

&nbsp;

<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/ILxjxfB4zNk" width="560"></iframe>

Source : British Heart Foundation 
 
British Heart Foundation (BHF) launched a campaign aimed at encouraging bystanders to perform hands only Cardiopulmonary Resuscitation in case of emergency. Actor and former footballer Vinnie Jones appeared in a humourous training video demonstrating hands-only CPR. It demonstrates a simple drill : Call 999 and push hard and fast in the centre of the chest to the tune of the song &#39;Stayin Alive&#39;.The BHF claimed at least 23 people used the technique&nbsp;in a medical emergency after seeing the ad.

<h2> 
Movember</h2>

&nbsp;

&nbsp;

<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/8w1p5UI7Siw" width="560"></iframe>

Source : Made Men

<meta charset="utf-8" />Movember, a fusion&nbsp;of the words &quot;moustache&quot; and &quot;November,&quot; is an annual movement where men ditch their razors for a month and grow moustaches to raise funds for prostate cancer, testicular cancer, and other men&#39;s health issues. Popularly known as &lsquo;No Shave November&rsquo;, this&nbsp;initially started as a fundraiser in 1999 that grew into a worldwide tradition, led by the Movember Foundation and has raised over $559 million to fund 832 men&#39;s health programs in 21 countries.

<h2> 
Spice Girls</h2>

&nbsp;

&nbsp;

<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/UpBoKjdm2Ek" width="560"></iframe> 
 
The United Nations&rsquo; Global Goals for Sustainable Development campaign recreated Spice Girls&rsquo; 1996 hit &ldquo;Wannabe&rdquo; to empower women by emphasising on a number of key women&rsquo;s issues like violence gender pay gap, and quality education for girls. It stars a range of stars from across the globe, including Canada&rsquo;s Taylor Hatala, Sri Lanka&rsquo;s Jacqueline Fernandez, Nigeria&rsquo;s Seyi Shay and the UK&rsquo;s M.O. The original &ldquo;Wannabe&rdquo; debuted on July 8, 1996 featuring Victoria Beckham, so this is a pitch perfect way to celebrate 20 years of completion.

&nbsp;

What an entertaining mix of social media and social responsibility!

&nbsp;

(Inputs from Shashwat Mittal and Devanshi Verma)

Sometimes, humour tells you where the trouble is

Social media, if used strategically, is one of the most powerful tool to communicate and engage with masses. While brand marketers are innovatively using the web to engage with potential customers, there are many who harnessed this impactful platform to raise attention and initiate action on social causes. Here, we talk about some majorly successful campaigns that used an out of the box approach of inducing a comic factor to grab attention of the masses. These campaigns, besides tickling audience's funny bone, also instigated a sense of responsibility in them to participate in a larger than life issue behind the humour. Here are brilliant examples of comedy being used to convey serious messages: ALS Ice Bucket Challenge Source : Shine On Media The ice bucket challenge was launched by the ALS association in 2014 to raise awareness about amyotrophic lateral sclerosis, a fatal brain disease that damages motor neurons. People poured a bucket of iced water over their heads in order to appeal for donations before nominating others to do the same. The campaign spread like wildfire over the internet with over 2.4 million entertaining videos circulating. Renowned personalities including Lady Gaga, Tom Cruise, Cristiano Ronaldo, Leonardo DiCaprio, Robert Downey Jr and Tom Cruise participated. The campaign raised over $100 million in the first month itself that was used to fund several research projects. One of these was Project MinE, where the researchers recently announced that they have identified a new gene associated with the disease, which experts say could lead to new treatment possibilities Feeling Nuts Source : @realhughjackman via Twitter (Twitter) × Brothers and founders of Salter Brothers Entertainment, Simon and Andrew Salter were touched and inspired by the story of Wendy Gough, a woman who lost her son to testicular cancer only because he was too embarrassed to talk about it. They launched the #FeelingNuts campaign where boys were to post a picture of crotch grabs to catch attention of males to check early symptoms of the disease. With support from celebrities like Hugh Jackman and Nick Jonas, the campaign reached 750 million people globally. The "simple and powerful message" of Feeling Nuts has impressed the British health minister Norman Lamb, the Liberal Democrat MP for North Norfolk, who said " we have to make sure as the government that the system is able to respond to those people who come forward as a result." Save The Internet, By All India Backchod Source : All India Bakchod All India Bakchod from India released a video - Save The Internet, that explained net neutrality and highlighted how telecom companies can change the internet usage scenario through a very basic and funny example. #SaveTheInternet took over Twitter trends with Bollywood stars like Shah Rukh Khan, Farhan Akhtar and Ayushmann Khurrana urging fans to support the cause. Africa For Norway Source : SAIH Norway A Norwegian group called Radi-Aid launched a video to request Africa to send radiators to Norway. The cause was the condition of freezing children during Norway’s severely cold winter months. The humorous video has a serious message. Their effort is a serious critique of the Western media coverage that stereotypes underdeveloped nations .The point is that images of pitiable Africans are just as imprecise as the idea of helpless freezing Norwegians. British Heart Foundation - Promoting Hands-Only CPR Source : British Heart Foundation British Heart Foundation (BHF) launched a campaign aimed at encouraging bystanders to perform hands only Cardiopulmonary Resuscitation in case of emergency. Actor and former footballer Vinnie Jones appeared in a humourous training video demonstrating hands-only CPR. It demonstrates a simple drill : Call 999 and push hard and fast in the centre of the chest to the tune of the song 'Stayin Alive'.The BHF claimed at least 23 people used the technique in a medical emergency after seeing the ad. Movember Source : Made Men Movember, a fusion of the words "moustache" and "November," is an annual movement where men ditch their razors for a month and grow moustaches to raise funds for prostate cancer, testicular cancer, and other men's health issues. Popularly known as ‘No Shave November’, this initially started as a fundraiser in 1999 that grew into a worldwide tradition, led by the Movember Foundation and has raised over $559 million to fund 832 men's health programs in 21 countries. Spice Girls The United Nations’ Global Goals for Sustainable Development campaign recreated Spice Girls’ 1996 hit “Wannabe” to empower women by emphasising on a number of key women’s issues like violence gender pay gap, and quality education for girls. It stars a range of stars from across the globe, including Canada’s Taylor Hatala, Sri Lanka’s Jacqueline Fernandez, Nigeria’s Seyi Shay and the UK’s M.O. The original “Wannabe” debuted on July 8, 1996 featuring Victoria Beckham, so this is a pitch perfect way to celebrate 20 years of completion. What an entertaining mix of social media and social responsibility! (Inputs from Shashwat Mittal and Devanshi Verma)

Social media campaigns that used comedy to bring awareness

The &#39;Ice Bucket Challenge&#39; that went viral two years ago, raising hundreds of millions of dollars, has helped identify a new gene behind the neurodegenerative disease ALS, or Lou Gehrig&#39;s disease, according to researchers. 
 
The challenge involved people pouring ice-cold water over their heads, posting video on social media, and donating funds for research on the condition, whose sufferers include British physicist Stephen Hawking. 
 
Celebrities including Hilary Swank and former US President George W Bush were among millions of people who took part in 2014, attracting more than 400 million views on social media. 
 
The challenge raised $220 million worldwide, according to the Washington-based ALS Association. News of the gene discovery again sent Ice Bucket Challenge viral on Wednesday (July 27). 
 
&quot;It is a worldwide effort. There were 80 authors on this publication from 11 different countries and so all of them contributed and if we didn&#39;t do this as one large group, this discovery wouldn&#39;t have been identified,&quot; John Landers of the University of Massachusetts Medical School said on Wednesday. Landers and Jan Veldink of University Medical Center Utrecht led the study. 
 
&quot;Once the Ice Bucket Challenge kicked in, the ALS Association, which received a large majority of the Ice Bucket money in the US came to us and said, &#39;Well, we can actually fund your study now&#39; and as a result of that, we&#39;ve been able to participate in this global effort on ALS genetics and as a result that was a major contributor to the finding that we just published indicating that we&#39;ve identified a new susceptibility gene for ALS,&quot; Landers continued. 
 
The money funded the largest ever study of inherited ALS and identified a new gene, NEK1, that ranks among the most common genes that contribute to amyotrophic lateral sclerosis. 
 
&quot;The importance of finding this gene is, from our point of view, is as we understand more and more of these genes we can actually understand what is going wrong in ALS patients. In reality we don&#39;t really have a good grasp on what is actually going wrong in ALS patients, but as we find more genes that seem to contribute to the disease itself, what it does is that it gives us what pathways may be going wrong in ALS patients and as a result this can lead us to therapeutic treatments for ALS patients,&quot; Landers said. 
 
The research was published in the scientific journal Nature Genetics this week and scientists hope it will provide another potential target for therapy development. 
 
(Reuters)

The money raised from the challenge in 2014 funded the largest ever study of inherited ALS and identified a new gene, NEK1

The 'Ice Bucket Challenge' that went viral two years ago, raising hundreds of millions of dollars, has helped identify a new gene behind the neurodegenerative disease ALS, or Lou Gehrig's disease, according to researchers. The challenge involved people pouring ice-cold water over their heads, posting video on social media, and donating funds for research on the condition, whose sufferers include British physicist Stephen Hawking. Celebrities including Hilary Swank and former US President George W Bush were among millions of people who took part in 2014, attracting more than 400 million views on social media. The challenge raised $220 million worldwide, according to the Washington-based ALS Association. News of the gene discovery again sent Ice Bucket Challenge viral on Wednesday (July 27). "It is a worldwide effort. There were 80 authors on this publication from 11 different countries and so all of them contributed and if we didn't do this as one large group, this discovery wouldn't have been identified," John Landers of the University of Massachusetts Medical School said on Wednesday. Landers and Jan Veldink of University Medical Center Utrecht led the study. "Once the Ice Bucket Challenge kicked in, the ALS Association, which received a large majority of the Ice Bucket money in the US came to us and said, 'Well, we can actually fund your study now' and as a result of that, we've been able to participate in this global effort on ALS genetics and as a result that was a major contributor to the finding that we just published indicating that we've identified a new susceptibility gene for ALS," Landers continued. The money funded the largest ever study of inherited ALS and identified a new gene, NEK1, that ranks among the most common genes that contribute to amyotrophic lateral sclerosis. "The importance of finding this gene is, from our point of view, is as we understand more and more of these genes we can actually understand what is going wrong in ALS patients. In reality we don't really have a good grasp on what is actually going wrong in ALS patients, but as we find more genes that seem to contribute to the disease itself, what it does is that it gives us what pathways may be going wrong in ALS patients and as a result this can lead us to therapeutic treatments for ALS patients," Landers said. The research was published in the scientific journal Nature Genetics this week and scientists hope it will provide another potential target for therapy development. (Reuters)

Ice bucket challenge credited for ALS gene breakthrough

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