USA Today
Laura Ungar
9-9-15
http://www.usatoday.com/story/news/nation/2015/09/09/former-nfl-players-fight-sparks-als-research/71952616/
Former NFL player Steve Gleason’s fight against the disease trapping him inside his once-athletic body has helped inspire a groundbreaking research project that aims to defeat ALS.
The project, announced Wednesday, will be spearheaded by Johns Hopkins University’s Robert Packard Center for ALS Research, Cedars-Sinai Medical Center’s Regenerative Medicine Institute and the Massachusetts General Hospital Neurological Clinical Research Institute. It represents the research initiative of Answer ALS, which grew out of a summit for an advocacy group Gleason founded and has been described as the largest single, coordinated effort to end the fatal neuromuscular illness.
“The bottom line is this will teach us about ALS…We hope this will teach us the pathway to an effective drug,” says physician Jeffrey Rothstein of Johns Hopkins, executive director of Answer ALS. Now, there’s only one federally approved drug that slows the disease a little bit, and “at a minimum, we need a drug to slow the disease (more.) What we aspire to are drugs to reverse the disease, but we’ll take it one step at a time.”
Experts estimate that around 30,000 Americans are living with ALS, or Amyotrophic Lateral Sclerosis, at any given time — with a new diagnosis, and an ALS death, every 90 minutes in the United States. The disease causes the gradual degeneration of motor nerve cells in the brain and spinal cord, resulting in difficulty swallowing and breathing and eventually paralysis.
Gleason, who played for the New Orleans Saints from 2000-2008, was diagnosed in 2011. He and his wife, Michel, formed the non-profit Team Gleason to inspire other patients to thrive after their diagnoses, provide them with technology, equipment and services, raise awareness of the disease and find ways to end it.
The Team Gleason Summit was held in 2013, bringing together more than 200 world-renowned researchers, as well as patients, caregivers and advocates, says Clare Durrett, associate executive director of Team Gleason. Durrett says Gleason and other patients asked researchers to come back with research plans.
At the same time, Rothstein says he and other scientists were working on research funded by the National Institutes of Health involving "induced pluripotent", or iPSC cell lines from ALS patients, which are adult cells that have been genetically reprogrammed to act like embryonic stem cells. But that initiative involved less than 20 subjects. Rothstein says this line of research and the summit were “two intersecting paths” that resulted in the initiative announced Wednesday.
To better understand ALS and discover therapies, scientists plan to “urgently” evaluate at least 1,000 ALS patients, collecting data at 5-7 clinics in various areas of the country over several years, in part using wearable technology. Scientists also hope to greatly widen the cell research, generating iPSC-derived brain cells from this large group of patients; and combine big data, biological analytics and technology. To speed up progress, all of the data will be available for free to the ALS research community.
“The idea is to bring solutions for patients now, and for patients in the future,” Durrett says.
So far, $20 million has been raised for Answer ALS in a funding effort led by the Leandro P. Rizzuto Foundation and the Robert Packard Center for ALS Research. Donors include the National Football League, the PGA TOUR and others, including insurer Travelers, where CEO Jay Fishman recently announced he has ALS.
Organizers are still hoping to raise another $5 million for the first phase of the project, which will be coordinated for the ALS Finding a Cure Foundation through the Robert Packard Center and Massachusetts General Hospital.
Gleason, who now expresses himself using technology that allows him to type through eye movements, writes that it’s inspiring to see how much money has been raised in a short time. “I believe that if we commit to this effort, on this scale," he adds, "we will have meaningful results in our lifetime.”
Laura Ungar
9-9-15
http://www.usatoday.com/story/news/nation/2015/09/09/former-nfl-players-fight-sparks-als-research/71952616/
Former NFL player Steve Gleason’s fight against the disease trapping him inside his once-athletic body has helped inspire a groundbreaking research project that aims to defeat ALS.
The project, announced Wednesday, will be spearheaded by Johns Hopkins University’s Robert Packard Center for ALS Research, Cedars-Sinai Medical Center’s Regenerative Medicine Institute and the Massachusetts General Hospital Neurological Clinical Research Institute. It represents the research initiative of Answer ALS, which grew out of a summit for an advocacy group Gleason founded and has been described as the largest single, coordinated effort to end the fatal neuromuscular illness.
“The bottom line is this will teach us about ALS…We hope this will teach us the pathway to an effective drug,” says physician Jeffrey Rothstein of Johns Hopkins, executive director of Answer ALS. Now, there’s only one federally approved drug that slows the disease a little bit, and “at a minimum, we need a drug to slow the disease (more.) What we aspire to are drugs to reverse the disease, but we’ll take it one step at a time.”
Experts estimate that around 30,000 Americans are living with ALS, or Amyotrophic Lateral Sclerosis, at any given time — with a new diagnosis, and an ALS death, every 90 minutes in the United States. The disease causes the gradual degeneration of motor nerve cells in the brain and spinal cord, resulting in difficulty swallowing and breathing and eventually paralysis.
Gleason, who played for the New Orleans Saints from 2000-2008, was diagnosed in 2011. He and his wife, Michel, formed the non-profit Team Gleason to inspire other patients to thrive after their diagnoses, provide them with technology, equipment and services, raise awareness of the disease and find ways to end it.
The Team Gleason Summit was held in 2013, bringing together more than 200 world-renowned researchers, as well as patients, caregivers and advocates, says Clare Durrett, associate executive director of Team Gleason. Durrett says Gleason and other patients asked researchers to come back with research plans.
At the same time, Rothstein says he and other scientists were working on research funded by the National Institutes of Health involving "induced pluripotent", or iPSC cell lines from ALS patients, which are adult cells that have been genetically reprogrammed to act like embryonic stem cells. But that initiative involved less than 20 subjects. Rothstein says this line of research and the summit were “two intersecting paths” that resulted in the initiative announced Wednesday.
To better understand ALS and discover therapies, scientists plan to “urgently” evaluate at least 1,000 ALS patients, collecting data at 5-7 clinics in various areas of the country over several years, in part using wearable technology. Scientists also hope to greatly widen the cell research, generating iPSC-derived brain cells from this large group of patients; and combine big data, biological analytics and technology. To speed up progress, all of the data will be available for free to the ALS research community.
“The idea is to bring solutions for patients now, and for patients in the future,” Durrett says.
So far, $20 million has been raised for Answer ALS in a funding effort led by the Leandro P. Rizzuto Foundation and the Robert Packard Center for ALS Research. Donors include the National Football League, the PGA TOUR and others, including insurer Travelers, where CEO Jay Fishman recently announced he has ALS.
Organizers are still hoping to raise another $5 million for the first phase of the project, which will be coordinated for the ALS Finding a Cure Foundation through the Robert Packard Center and Massachusetts General Hospital.
Gleason, who now expresses himself using technology that allows him to type through eye movements, writes that it’s inspiring to see how much money has been raised in a short time. “I believe that if we commit to this effort, on this scale," he adds, "we will have meaningful results in our lifetime.”