Answer ALS: A Revolutionary Project to Cure ALS

Screen Shot 2015-09-29 at 8.56.40 PMAA-logo

As seen on ALS News Today

The launch of Answer ALS, the largest comprehensive research project to cure Amyotrophic Lateral Sclerosis (ALS) was announced in a press release by the Johns Hopkins University’s Robert Packard Center for ALS Research in Baltimore, MD, the Cedars-Sinai Medical Center’s Regenerative Medicine Institute in Los Angeles, CA, and the Massachusetts General Hospital Neurological Clinical Research Institute, Boston, MA.

ALS is a rapidly progressive and fatal disease characterized by a degeneration of motor neurons. As disease evolves, the brain loses its ability to control muscle movement, eventually leading to body paralysis. There is no effective treatment for this disease, which annually affects 2-4 people in every 100,000 in Europe and the US.

Answer ALS aims at: i) finding the causes of ALS; ii) develop human cell models to understand ALS and screen for drugs and therapies; iii) implement individual ALS therapies based on each patients’ own brain cell data; iv) establish therapies that could improve ALS symptoms and eventually cure them; and v) freely disseminate all the information collected to worldwide in order to advance therapy development.

To achieve these goals, the project will have an aggressive and comprehensive research policy – real-time 24/7 monitoring and thorough clinical and biological data collection of a large patient population (minimal 1,000 patients); generation of pluripotent cell lines from each patients’ brain cells to create novel cellular models; simultaneous analysis of all data gathered using comprehensive algorithms that include patients’ clinical, cellular, biochemical, genetic, steam cells and robotic images; and the creation of a collaborative consortium with world’s experts on clinical, cellular, biochemical, genetics, stem cells and big data analysis fields.

Dr. Jeffrey Rothstein, Director of the Brain Science Institute and the Robert Packard Center for ALS Research at Johns Hopkins University and the Executive Director of Answer ALS stated“This project will bring together world-renowned ALS research scientists to work against an aggressive timeline for understanding, treating and eventually finding a cure for this disease. The substantial initial funding from these generous supporters is a critical step forward in our effort to provide hope to those affected by ALS.”

The project is expected to generate the world’s largest comprehensive ALS data, encompassing all clinical and biological aspects of each patient enrolled in the project. Machine learning and big data technology will be used in data analysis to unveil ALS causes, subtypes, key pathways and drug targets. This information will help in the development of new clinical trials and in novel categorization methods for patients to identify specific ALS pathways, biomarkers and disease pathophysiology, which will aid in the early diagnosis of the disease and treatment efficacy.

The project is a result of the 2013 ALS Team Gleason Summit – an initiative of the former NFL player Steve Gleason, who lives with ALS – in which leading ALS researchers, patients, caregivers and advocates came together to decide what measures were necessary to overcome this devastating disease. At the moment, the project encompasses nearly two dozen US research institutes, being directed by Dr. Jeffrey Rothstein co-aided by Dr. Clive Svendsen, Director of the Regenerative Medicine Institute at Cedars-Sinai Medical Center and Dr. Merit Cudkowicz, Chief of Neurology and Co-Director of the Neurological Clinical Research Institute at Massachusetts General Hospital.

Answer ALS is funded by a Committed Team of Donors that include the ALS finding a cure project from the Leandro P. Rizzuto Foundation, the Robert Packard Center for ALS Research, the National Football League, PGA TOUR, Travelers, The Fishman Family and The Bari Lipp Foundation. Thus far, $20 Million have been contributed. A total of about $25 million is required for the first phase of the program. Funding will be coordinated through the Robert Packard Center for ALS Research and the ALS Finding a Cure Foundation.

ALS Association and Target ALS to Expand Tissue Core for ALS Research

As seen on PRNewswire


WASHINGTONSept. 24, 2015 /PRNewswire-USNewswire/ — The ALS Association and Target ALS are pleased to announce the launch of a new collaborative effort to expand the collection of biofluids from people with ALS, to be used for research to better understand the disease and ultimately develop new treatments.

The ALS Association will be investing $1,392,668 over the next 38 months. Funding from The ALS Association will allow pre-mortem biofluids (serum, plasma, and cerebrospinal fluid) to be collected and stored at the sites that comprise the Target ALS Postmortem Tissue Core at Barrow Neurological Institute/Saint Joseph’sHospital in PhoenixColumbia University in New YorkGeorgetown University in Washington D.C.Johns Hopkins University in Baltimore, and University of California at San Diego. Detailed genetic analysis will be performed on all these cases at The New York Genome Center, all the data will be linked, and all of the samples and data will be made available for researchers around the world.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure, and only one drug approved by the U.S. Food and Drug Administration (FDA) modestly extends survival.

The Target ALS Postmortem Tissue Core is a unique resource in the field of ALS research, providing high-quality post-mortem tissue for academic and industry researchers throughout the world. Target ALS has invested $1.04M to date into the core. The addition of pre-mortem biofluids from the same individuals will greatly expand the potential utility of the samples, by allowing researchers to explore biomarkers in biofluids that correspond to changes in tissues.

“The studies that will be made possible by the addition of biofluids to the Tissue Core have the potential to deepen the understanding of the ALS disease process and, through discovery of new biomarkers linked to specific aspects of the disease, accelerate the search for new treatments,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D., M.B.A. “We are very pleased to be partnering with Target ALS on this important initiative.”

“This partnership has created a first-of-its-kind resource to lower the barriers for, and accelerate the pace of translational research in ALS.  Target ALS is delighted to partner with The ALS Association on this much-needed initiative,” said Target ALS Executive Director Manish Raisinghani, M.D., Ph.D.

About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.  For more information about The ALS Association, visit our website at

Target ALS is a privately funded international consortium of researchers from academic and biotech/pharma laboratories entirely focused on finding a treatment for patients living with ALS. We fund Research Consortia that have accelerated identification and validation of new targets for treatment of ALS, Springboard Fellowships to support work of emerging research leaders, and core facilities that lower barriers for cutting edge ALS research worldwide. For more information visit our website at

SOURCE The ALS Association


Haircuts & Hot Rods–Salt Lake City Car Show to Benefit ALSCrowd

The 1st annual Blues Barbershop Car Show will take place on September 19at Holladay City Hall  (2300 E. 4650 S. in Salt Lake City) with all proceeds benefiting ALS Crowd. The event will include t-shirt sales, live music (including Ryan Innes from NBC’s The Voice), concessions, family activities, and new and classic cars. Sponsors are invited to co-brand merchandise, show corporate cars, have a booth, and are encouraged to provide fundraising/ matching challenges during the event. Contact Christi Wedig, Blues Barbershop, at: 435-773-7031




Paralyzed patients can control computers just by moving their eyes, thanks to this free software

businessinsider optikey-logo

As seen on Business Insider

By Dan Turkel

Julius Sweetland wasn’t happy with the software options available to people with severe physical and speech impairments, so he spent the past three and a half years building his own eye-controlled interface as a cheap alternative to the competition.

With a $100 eye-tracker and his free software, people with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) or other impairments can type, click, and even speak through a computer without the use of their hands or voice.

In a two-minute demo, Sweetland, a 32-year-old London-based developer, shows off the latest build of his software, OptiKey. A large keyboard fills the screen and Sweetland, shown holding his hands up on a small embedded webcam feed, types using his eyes alone. Next, with an eye-controlled “click,” the software reads back what he’s written.

A device similar to a webcam tracks Sweetland’s eye movements as he shifts his gaze from one letter to the next. Automatic suggestions pop up like they would on an iPhone, but he hardly seems to need them as OptiKey correctly determines the words he wants by analyzing the letters he’s looked at.

OptiKey handless demoYoutube/Julius Sweetland Developer Julius Sweetland shows off typing without the use of his hands in the first OptiKey demo video.

As shocking as it may seem to the average user, OptiKey is not groundbreaking technology. In fact, the study of eye-tracking dates back to the 19th century and its use for computer control began in the 1980s.

However, many eye-tracking interfaces are prohibitively expensive, making computer use difficult or even impossible for people — like those with ALS — who are unable to use a keyboard, mouse, or voice controls. Speaking with Business Insider, Sweetland said that this isn’t fair. “There are a lot of ‘off-the-shelf’ solutions out there … [but]you’re looking at thousands of dollars for something like this.”

It’s true. On the lower end of the spectrum, the PCEye Go from Tobii will cost you $1,995. And commentors in a Reddit thread discussing OptiKeyreference alternatives priced as high as $14,000 or $17,000, which Sweetland calls “absurd.”

Cheaper eye-tracking hardware has come to the market, but there isn’t always accessibility software to use with it. The Eye Tribe offers a $99 eye-tracker but, since it’s currently aimed at developers, it comes with little software of its own. That makes it a perfect match for the OptiKey, and it comes as no surprise that the two projects endorse each other.

Sweetland has been programming since he was 5, and his day job has him coding trading software for the financial sector. It was the experience of an aunt who died of motor neuron disease (a blanket term for a family of diseases including ALS) that inspired him to get involved in “augmentative and alternative communication,” a fancy term for technology that helps people with physical or speech impairments communicate.

Sweetland initially tested OptiKey himself, along with a small group of users around the globe. Recently, however, he has been working with the Royal Hospital for Neuro-disability in Putney, London, to get better feedback from a patient there.

“Users never do things how you’d expect them to,” remarks Sweetland. “I came away with a lot of things to change. It took me over a month to get them all into version 2.”

As for the patient, he enjoyed his OptiKey experience. “He’s an ex-software developer also, so we geeked out a bit. I’m going to go and see him again soon to show him the changes he helped shape,” Sweetland said.

All of the code for OptiKey is available on the collaborative code-sharing site GitHub, and Sweetland pledges that it will remain free and open-source forever. “I couldn’t see a way to charge people for this that I felt comfortable with. Lots of people told me I’d be crazy to open source it, but this has always been a project close to my heart and it didn’t feel right to profiteer.”

Since it is a spare-time passion project for him, he hopes that developers will contribute to the project. “I’d love to see it expand beyond my original plans.”

Intel releases Stephen Hawking’s speech software online for free for ALS Patients

As seen on FirstPost

London: A software by Intel that lets physicist Stephen Hawking communicate via a computer has been published online by the company in the hopes that it will be used by researchers developing new interfaces for sufferers of diseases like amyotrophic lateral sclerosis (ALS).

The programme interprets visual signals and translates them into words, which are then “spoken” by a machine.

Intel originally developed the technology specially for Hawking but it has been used by other sufferers of motor neurone disease (MND).

Hawking, 73, suffers from a rare early-onset slow-progressing form of ALS that has gradually paralysed him over the decades.

Photo: The Guardian

Photo: The Guardian

The Assistive Context-Aware Toolkit (ACAT) helps Hawking communicate by interpreting sensor data capturing movements in his cheek muscles but other parts of the body may be used.

Anyone can now download and experiment with the system.

Intel hopes that ACAT, which runs on Microsoft Windows 7 or higher, will be used by researchers developing new interfaces for sufferers of diseases like ALS.

The programme and full source code have been published on code-sharing site GitHub.

Intel told the BBC that the software can carry out various functions besides sending text to a speech synthesiser.

“We have contextual menus to access all different parts of your computer,” said Lama Nachman, principal engineer.

“If you want to use Word, surf the web or speak you can use ACAT for that,” Nachman said.

She added that the team had already experimented with a variety of different sensors, and they are hoping developers will try out other options suited to each patient’s needs and abilities.