Until medicine proves otherwise, technology IS the cure…
That’s the mantra of the ALS Residence Initiative, a group spearheading the construction of a series of permanent residences specifically designed for individuals living with the fatal neurodegenerative disease, amyotrophic lateral sclerosis. The first such residence officially opened in Chelsea on August 13th, and it comes equipped with a technological payload that would make a nuclear submarine commander proud.
Each resident has a computer control panel mounted on his or her wheelchair. Controlling the computer mouse using whatever muscular movement they still possess (their head, eyes, or fingers,) the resident can issue commands that are beamed via infrared transmitters to a series of receivers scattered throughout the center. The commands are then bounced to a master computer that opens doors, turns lights on and off, draws the blinds, takes room service orders, and even operates toilets. The end result is a smart house that provides once unimaginable levels of independence to individuals suffering from neurodegenerative disease.
The center came to life through the work of Barry Berman, CEO of the Chelsea Jewish Foundation, and Steve Saling, a 41-year old former landscape architect who was diagnosed with ALS four years ago. The Chelsea Jewish Foundation operates the Leonard Florence Center for Living, a 100-bed nursing home in Chelsea. In addition to the ALS residence named after Saling, the Leonard Florence Center has also built a residence designed for multiple sclerosis patients.
Asked what he would do if he lost the ability to move his computer mouse using his eyes and head, Saling pointed to technology currently in development that would allow ALS patients to control computers with their brain waves. That technology would be the subject of the keynote speech at the 4th Annual ALS Roundtable that followed the grand opening of the residence.
Prize4Life partnered with the Massachusetts Chapter of the ALS Association to launch the Roundtables. Recognizing that there are many organizations across Massachusetts working to cure ALS, Prize4Life co-led the charge to bring these groups together so that they could share information and best practices and identify opportunities to work together towards a common cause. We are enormously proud of what the Roundtables have yielded, including the opportunity to learn from Dr. Leigh Hochberg the latest developments in the brain wave technology known as ‘BrainGate.’
BrainGate aspires to literally turn thoughts into action. A chip is placed in the brain and records signals that correspond to imagined limb movement. Decoder software and hardware then translate these signals into usable commands for an external device. In Saling’s case, the external device would be a computer mouse that would allow him to ‘think’ the cursor across the screen. But BrainGate’s imagination reaches much farther than that. Scientists hope that the technology can one day be used to control prosthetic limbs, or even coupled with electronic stimulation so that the mind can bypass damaged nerves and move once-paralyzed muscles.
But for the time being, ALS patients like Steve Saling must be content with the simpler joy of turning a light off when they are ready to sleep and merely dream of much more complex joys like walking and talking. Steve’s son, Finn, was born just one month before Steve was diagnosed. When interviewed for an article in the Boston Globe, Steve described his role as a father. “I’m right now watching my brother canoe to shore with Finn in his lap. I wish that could be me.”
While the Leonard Florence Center for Living Steve Saling Residence in Chelsea is a quantum leap forward in technology, it is, sadly, not a cure. It provides independence to be sure, but not the freedom to hold one’s child in one’s arms. To achieve that, we have no alternative but to bring together the minds, money, and breakthroughs needed to eradicate ALS.
That’s where Prize4Life comes in. Prizes have the ability to attract new ideas from new sources. And when those prizes are highly focused on results, are ours are, they can drive breakthroughs that will accelerate progress toward a cure. Awarding prizes in the biomedical field is a new, relatively unproven model. But the old ways simply haven’t gotten the job done.
Learn more about our prizes here.
For more information on the Leonard Florence Center for Living, you can visit www.leonardflorencecenter.org.
For more information on BrainGate, visit www.braingate2.org.