Technology: a gaitway to life

 

Prof Tim O'Brien, who has motor neuron disease, uses software that tracks his eye movements to communicate.Photograph: Alan Betson

Prof Tim O’Brien is a co-founder of one of the first gait laboratories in the world, writes JUNE SHANNON

PROF TIM O’BRIEN, consultant orthopaedic surgeon and director of the gait analysis laboratory at the Central Remedial Clinic (CRC) in Dublin, was the first professor of orthopaedics to be appointed in Ireland.

Over the past 37 years he has been at the forefront of education, clinical research and innovation in his chosen specialty. During this time he was also diagnosed with motor neuron disease (MND).
While MND cruelly robs sufferers of the use of their body it does not affect the mind. Diagnosed in 1993 it is testament to O’Brien’s strength of character that he continues to work full-time despite being paralysed and reliant on a portable ventilator.

He communicates using special software, which enables a sensor to follow his eye movements allowing him to pick out letters on a specially adapted laptop, which then transmits the words he types into speech.

In 2005 O’Brien was awarded the prestigious Lifetime Achievement Award at the Irish Journal of Medical Science (IJMS) Doctor Awards for his life-long clinical interest and research achievements in orthopaedics, including research on the development of the immature hip joint in babies and the assessment of gait patterns in children.

In 1990, together with physiotherapist Anne Jenkinson, O’Brien established one of the world’s first gait laboratories in the CRC which remains the only clinical gait laboratory in the State.
Gait analysis is the scientific study of how somebody walks. Using technology, O’Brien and his team assess, diagnose and recommend treatment for patients with a variety of gait disorders.
“When we started it was a big investment and we did not know how it would develop as there were only a few other clinical laboratories in the world,” O’Brien explains.

The majority of patients seen at the gait lab are children with neurological disorders such as cerebral palsy. Caused by an abnormality in the brain that controls muscle movement, children with cerebral palsy suffer a range of physical disabilities that affect their ability to walk, such as a lack of muscle co-ordination and tightness or stiffness in the muscles.

Gait analysis can make a huge difference to these children particularly where it picks up issues that may stop a child from walking altogether.

The gait lab in the CRC sees about 360 patients a year and the numbers are increasing every year. Approximately 50 per cent of the patients attending the lab live outside Dublin and in an effort to reduce the amount of travelling his patients had to endure, O’Brien and the manager of the gait lab, Mike Walsh, pioneered the world’s first mobile gait analysis unit in 2004.

A mobile gait lab now travels to Limerick and Waterford a number of times a year.

The gait lab uses an impressive range of technology to assess a patient, including video to record how they walk. Computer markers are placed on specific points such as the ankle, knee and hip joints and motion analysers then replicate an accurate 3D computerised model of how the person walks. Force plates built into the floor of the lab measure the amount of force a person puts on their joints when walking and a system called electromyography (EMG) is used to measure the electrical activity in the muscles which can show if a muscle is over or underactive.

O’Brien explains that the gait lab was initially established as a means of recording walking patterns to see how children at the CRC responded to therapy and surgery.

“As a result of the gait laboratory, surgery has changed and some procedures are no longer advised while some others are seen to make a big difference to walking.

“As we became more experienced we identified patterns of walks that would respond to surgery and we adopted an advisory role. Now 10 per cent of our clients are referred for diagnostic reasons. This is because certain neurological disorders or injuries have characteristic patterns of movement which we can see but are too hard to observe clinically,” he added.

Alongside pioneering technology in the development of gait analysis, O’Brien also uses technology that allows him to continue working and to share his expertise.

On the day of my visit to the CRC I sat in on a meeting where members of the team presented cases to O’Brien that they had assessed the previous week in the lab.

I watched in amazement as O’Brien studied the videos of patients walking, analysed graphs and read the results of complex tests, all of which were projected onto a large screen.

Having completed his expert review he then wrote and emailed the results of his assessment along with recommendations for further treatment, such as surgery where necessary, back to the referring doctor. He did all of this with his eyes.

“There is no doubt that technology has made a big difference for me personally and professionally,” O’Brien says. “When I first saw gait analysis in Boston in 1984 the staff were tracing out limb movement from photographs. It was a start but in two dimensions.

“Now we have automated three-dimensional gait analysis using improved technology. This also extends to our office management and record-keeping in a Sharepoint application where all records are digital and instantly available.

“Efficiency and labour saving are the big advantages of this system. Personally new technology allows me to work efficiently,” he said.

Seeing how technology can make a massive difference to both his life and that of his patients, O’Brien says that the public health service appeared slow to adopt new technology.
“Here in our laboratory through private funding we developed a Sharepoint application that allows us to retrieve all patient data including documents, X-rays and gait analysis with one click. Such systems should be widely available in the health service as they save so much time.”

O’Brien is also an accomplished researcher and writer and has a huge interest in the great megalithic sites of Newgrange and Loughcrew.

Asked about how he felt on being diagnosed with motor neuron disease O’Brien says that by the time he received the diagnosis he had “a fair idea” and was not shocked by the news.

He also pays tribute to his wife and constant companion Mary, who is one of the State’s leading experts in domiciliary ventilation.

“I concentrated more time on those aspects of my practice that were easier for me such as teaching, research and the gait laboratory.

“With great support from the CRC and the children’s hospital [Temple Street] it has been possible for me to continue in full-time work. Technology and my wife make up for my lack of mobility,” he said.

The Joy Factory’s Charis Wheelchair Mount For iPad Is Awesome

 

3:15 PM EDT, Oct. 15th, 2012 · Nancy Gravley · Quick Look Review

The Charis Wheelchair Mount for iPad 2 and iPad 3 from The Joy Factory is an adaptation that can be swiftly and easily added to any wheelchair to hold the iPad in a place that is both comfortable and easy to reach for the individual who relies on the chair for transportation. It works with both electric and standard wheelchairs.

Charis Wheelchair Mount

The Charis mounts are built of high-quality carbon fiber arms. The material that is used is surprisingly lightweight yet incredibly strong. There is a double arm design and special joint designs that also contributes to the strength.

Chair Wheelchair Mount arm component

The clamp mount will clamp to any flat surface as would be expected, but it is also grooved, thus allowing it to clamp to the round spokes of any wheelchair. The clamp mount will clamp around any flat or round object up to two inches (5.08 cm). Like the other joints that are a part of the product, the joint that connects to the clamp rotates.

Clamp mount with groves

Part of the Charis Mount is a custom case for the iPad that attaches to the arms with a unique magnet system. Although the review unit is for the iPad 2 and 3, there is also a custom case available for the original iPad. The iPad must be inserted into the case for the magnet system, called the MagConnect™ to work. Once the magnet in the case and the magnet in the arm connect, a precision screw tightens for a secure fit. Once securely in the case, the iPad can be rotated 360 degrees. The iPad can remain in the case and be removed from the mount by unscrewing the case so it can be used away from the wheelchair. There is a button cover on the back of the case that protects the magnet on the back of the case.

Custom iPad case attached to arm

Using the product
As noted, there are two part to the Charis. The arm component and the iPad case. The case is compatible with the Apple Smart Cover. The first step of installation is installing the arms. This involves identifying the appropriate place on the chair to attach the arms. This will take some trial and error on the part of both the installer and the consumer. (This is particularly true if the installer doesn’t know her right from her left, but we won’t go there.)
Once the ideal location has been identified, then it is a simple process to adjust the different portions of the arms and case to have the iPad at the exact place the consumer wants it to be.

Charis Mount in use

The adjustable arm design allow the arms to be loosened by turning one lever and moving the arms out of the way without changing the basic setup of the Charis. The same is true when the Charis needs to be moved back in place.
The Joy Factory, Inc. warrants to the original purchaser against defects in materials and workmanship for the period of one year unless specified. In addition the company provides a free service to customers who register for it. It includes an extended three year warranty and special customer support should special needs require modifications.
Do I recommend it?

I do. This product is well designed and well constructed and anyone, even me, can install it in under half an hour. I have 30 years experience working with people with various disabilities and I think this product is a marvelous enhancement for anyone who wants their iPad at hand.

Company: The Joy Factory

List Price: US$179.95

Pros: Well built, strong, well designed mount allows individuals in wheelchairs to have independent access to their iPads.

Cons: None noted.

Nancy Gravley

Nancy retired from a position in human services after 30 years and is spending her retirement years spreading the joy of the Mac. She teaches beginner skills, writes a blog, and serves as president of a large Mac User Group (MUG) in addition to writing and reviewing products for TMO. She has three children, three grandchildren, and two great grandchildren. Life is good.

My Wheelchair Knows More Than Yours

From: University of Michigan EECS News - 2012 - page 25

Prof. Benjamin Kuipers is pursuing research into the areas of robot learning, perception, exploration, spatial mapping and navigation, and human-robot interaction. He and his group are working on the Intelligent Robotic Wheelchair (now in its second generation), which uses laser range-finders and computer vision to perceive a local indoor environment. Recent research results include computer vision methods for indoor scene understanding, control methods for safe and comfortable motion by the wheelchair, and an efficient method for managing a potentially large number of hypothesized cognitive maps. The research in the Kuipers group is sponsored in part by the National Science Foundation and by the Toyota Technical Center in Ann Arbor.

Source:

http://www.eecs.umich.edu/eecs/about/EECSNews/EECSNews12.pdf

 Links:

Benjamin Kuipers

http://web.eecs.umich.edu/~kuipers/

The Michigan Robotic Wheelchair

http://www.facebook.com/events/64990407882/

Nell Hardy (PALS): DeGeneres’ ‘saucy optimism’ is tonic for courageous local woman

Pictured below Nell Hardy, a person with ALS and Ellen DeGeneres. Nell communicates only by use of an eye gaze communication device. 

By NELL HARDY
Contributing writer

Advertisement

I have only been handicapped for the last two of my 54 years.

As my degenerative neuron disease of amyotrophic lateral sclerosis (ALS) marches relentlessly forward, I've had to be a quick study in wheelchair restrictions and regulations. Blah! After a recent journey to California, though, I came back with an attitude: These wheels rock!

I received the trip through the Dream Foundation, a nonprofit organization that grants wishes for adults with life-limiting illnesses. My desire was to watch a taping of "The Ellen DeGeneres Show." Her saucy optimism and humor is the perfect medicine for me.

My nurse-friend Stacie and friend Vicky began the process in April. After a flurry of paperwork, phone calls and months of waiting, my dream began to unfurl. We traveled to Cleveland, where I had to relinquish my wheelchair and attached computer -- my arms, legs and voice. I can no longer speak after undergoing a tracheostomy in January. I communicate solely through my computer, where the cursor is moved by my eyes.

My wheelchair, worth a small car, was chucked beneath the plane while I was wheeled on with a chair designed to fit the narrow plane aisles. I silently blessed my 100-pound frame as airplane employees strapped me on to a seat barely a foot wide.

The next hurdle was overcoming the contour of the seat. I can no longer hold my head upright and faced a four-hour flight with my head slumped forward. Enter the ultimate, invaluable fashion accessory: a scarf. We commandeered one, lashed my head to the back of the seat and were California-bound.

We gathered my sister Caroline and our rental van, decompressed, and slid into Los Angeles, second in size only to New York City. Our hotel in nearby Burbank was lush and inviting, even giving us an upgrade. I noticed again the way all events were slotting neatly into pace.

We relaxed and unwound, looking at the next day and taking stock of the energies needed for a day of play.

The next morning, we headed to Venice Beach, one of more than 100 beaches along the California coast. After a leisurely seafood lunch of red snapper, sole and lobster, we headed north to Santa Monica.

We wove in and out of the shops, picking up T-shirts and presents. And I realized, with startling clarity, I needed to give up any illusion of control. Other than an occasional glance left or right, I couldn't direct the three women with me. I can't control the progression of my disease. The only thing I could change was my attitude. What a revelation!

I shifted softly in my chair where I spend two-thirds of every day and took a full breath of Pacific air. I began to catch people smiling at me. I noticed the purple ocean mist rising off the water at the edge of nightfall. It was a dreamlike sequence of events and a glorious freedom.

The next day, we were at Warner Brothers by 2:30 p.m., resplendent in new outfits and gripping our VIP tickets. A wheelchair usually warrants some privileges, one of which is immediate attention. Ellen's peeps didn't let us down. They deftly moved us from the initial holding area in a parking lot through two more waiting rooms until we spilled into Stage 1, the taping studio. My wheelchair was first in line. I couldn't have ordered a better dream.

At this point, 30 minutes before taping, the studio was controlled chaos. Ellen's female employees were thin, young, tall, blond, tanned. The requisite rope bracelet adorned most wrists. Many charged up and down the aisle stairs, shifting seats and answering questions.

With the help of placards and grand gestures, a gentleman employee was solely in charge of whipping the audience into a cheering frenzy, then silencing them in seconds. By the time Ellen made her way to the stage entrance, the audience was lying in wait. We erupted when Ellen came into view.

I was in the handicapped section -- barely seven or eight strides from the chair that she dances into five days a week. To see the same set that I usually view from my living room was indeed a dreamy experience. And we even lucked into an impromptu question-and-answer session with the daytime television star.

While at least seven cameras clicked and whirled around each other in a metallic tango, Ellen threw 10 questions into the audience. Stacie, my friend and nurse, grew more animated with each question while my sister and Vicky pumped fists and hooted, pointing with expansive gestures toward Stacie. It's not hard to guess who got to ask the 10th and final question.

Stacie introduced me, explaining to Ellen that I use her show as a tool to stay positive and optimistic. "What do you use," asked Stacie, "to stay upbeat?"

"People like Nell," Ellen promptly responded, to the delight of her audience. I wanted to jump up, shout and cry, none of which I could do. She went on to say it was a privilege to be in a profession where she met courageous, disabled individuals.

Maybe my disability is a blessing rather than a burden. Whatever happens, I know Ellen is in my corner.

NELL HARDY lives in Fairview and enjoys reading, writing and raising her three sons (nhardy1@mydvox.com).

 

 

Federal Robotics Initiative Gives $1M to Make Brain-Controlled Exoskeletons

From: Robotics Trends - 08/29/2012

Scientists at Rice University, the University of Houston (UH) and TIRR Memorial Hermann have received a $1.17 million grant from the National Institutes of Health (NIH) and the President's National Robotics Initiative (NRI).  The combined device will be validated by UTHealth physicians with as many as 40 volunteer patients in the final two years of the four-year R01 award, the oldest research grant offered by the National Institutes of Health (NIH).

The multidisciplinary team hopes to develop and validate a noninvasive brain-machine interface (BMI) to a robotic orthotic device that is expected to innovate upper-limb rehabilitation. The new neurotechnology will interpret brainwaves that let a stroke patient willingly operate an exoskeleton that wraps around the arm from the fingertips to the elbow.

 Read the entire article at:

http://www.roboticstrends.com/service_healthcare/article/federal_robotics_initiative_gives_1m_to_make_brain_controlled_exoskeletons/

 

Links:

José Luis Contreras-Vidal

http://www.ee.uh.edu/faculty/contreras-vidal

http://www.sph.umd.edu/KNES/faculty/jcontrerasvidal/research.html

 

Rice's Mechatronics and Haptic Interfaces Lab http://mahilab.rice.edu/

 

Mechanical design of a distal arm exoskeleton for stroke and spinal cord injury rehabilitation.

http://www.ncbi.nlm.nih.gov/pubmed/22275629

 

Stroke patients get helping hand from 'telepathic' robot arm which can respond to your thoughts http://www.dailymail.co.uk/sciencetech/article-2197537/Stroke-patients-helping-hand-telepathic-robot-arm-respond-thoughts.html

Life with ALS...Farel Robins' story

http://www.dailystatesman.com/story/1899174.html

Sunday, September 30, 2012

Purchase this photo at dailystatesman.com NOREEN HYSLOP - nyslop@dailystatesman.com Farel Robins of rural Advance, who suffers from ALS, is shown sharing a lighter moment with his wife, Eileen, as he utilizes a specially equipped computer that voices concerns or commands. ALS strikes about five in every 100,000 people worldwide. [Order this photo]

By NOREEN HYSLOPManaging Editor ADVANCE, Mo. -- At just over six feet, five inches tall, Farel Robins was always a towering figure. A retired postal clerk, Robins has always had a passion for flying and has been an accomplished pilot for most of his 68 years. But Robins no longer walks tall, and the veteran pilot has taken his final flight above the skies of Stoddard County. Robins was diagnosed with ALS nearly three years ago. The first symptoms appeard in December 2008. "We were out shopping one day," recalls his wife, Eileen, from their spacious rural Advance home, "and suddenly he was dragging his right foot behind him. We had no idea why. I was afraid he had suffered a stroke." The initial visit to the doctor resulted in a prescription for therapy for a condition called "drop foot." Therapy was not at all beneficial at the time. It was a prescription, the couple would learn later, that did more harm than good. But the couple was months away from a confirmed diagnosis of ALS, and were following doctor's orders. Finally in September 2009, the Robins drove to St. Louis for an appointment at Barnes Hospital. Experts there confirmed that Farel had amyotrophic lateral sclerosis -- more commonly referred to as ALS or Lou Gehrig's disease. ALS is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. The disease strikes about five out of every 100,000 people worldwide. In about 10 percent of the cases, ALS is caused by a genetic defect. The cause is unknown in the other 90 percent of patients. The nerve cells of an ALS patient wither away and die. As the disease takes its toll, the nerves are no longer capable of sending messages to the muscles. The process leads to first weakening of the muscles, twitching, and then an inability to move the arms and legs, eventually affecting the entire body. There is no cure for ALS. It is an ugly, unforgiving disease that, in the end, leaves its victims virtually motionless. The brain, however, is unaffected by the disease, and so the patient is ever aware of his or her diminishing capacity as the illness progresses over a period of three to five years. In the end, the disease robs the patient of the ability to swallow. When the muscles in the chest stop functioning, it eventually becomes impossible to breathe on one's own. Farel Robins is in the late stages of ALS. The man who once stood so tall is now confined to a wheelchair, specially designed for his height. And he seldom takes a breath without the aid of oxygen. Until recently, he could sip from a straw and relieve a dry mouth with ice chips, but those days are now behind him. He is equipped with a feeding tube. For a four-hour period each day, a smooth liquid meal of nutrition makes its way into his stomach through a line that is fed into a port on his left side. He is lifted with the aid of a swing-type brace that is placed under and around his long frame. Eileen helps Farel as the belted contraption "hoists" him from one setting to another.  Eileen is never far from her husband's side. Since a specially equipped recliner now offers more comfort than a bed, he spends his nights there.  "I just pull up a twin mattress and lay it down on the floor next to him in case he needs me through the night," Eileen says, with the same smile that gets her through the everyday continual challenges of the disease. Eileen has witnessed the steady decline of her husband for nearly four years. Every doctor's visit entails a breathing capacity test. "He still had 58 percent lung capacity last year," she notes. "But that dropped down into the 40s, and in June this year, it declined to 19 percent. When we visited the doctor in August, he didn't want to tell me what the number was." Farel's voice is now reduced to a raspy whisper, and his breathing is shallow. And yet, he smiles and converses with what little speaking ability remains. His wife acts as an interpreter when the words don't come or when they are too difficult to comprehend. Despite the toll the disease has taken and the fear of the unknown, Robins projects a positive attitude, never questioning why he has been stricken with such a devastating diagnosis. Rather, he still enjoys a little time each morning at his computer, catching up with friends with Eileen's assistance, and reading some online news. He follows a daily routine that changes only as more limitations surface. Frustration seems to be a thing of the past. For Farel Robins, there is no point in dwelling on the 'whys' -- he'd rather wake up spending what quality time remains for him in the company of a devoted wife who approaches each task seemingly with the ease and poise of an expert in the field. "I've learned to do what I have to do," Eileen explains. "We've been very fortunate to be equipped with this equipment to help Farel. I have no doubt that without them, he would not still be here."The machines to which Eileen refers are within her reach at all times. One is a cumbersome "cough assist" unit. When phlegm makes its way to Farel's chest or throat and causes choking, Eileen places a mask from the cough assist over her husband's face. Once in place, the mechanism forces air into the chest and then pulls it out, usually releasing any obstruction. If that doesn't suffice, she uses a suction tube that she places down Farel's throat in a second effort to clear the airway. "That's a very scary procedure," Eileen says, "but when he can't get relief from the cough assist, that's what we have to do." Another device is utilized twice daily for 20-minute intervals. Again a bulky device, it wraps around the chest, and once put into operation, it literally shakes the chest wall, vigorously vibrating to loosen any chest congestion that has developed as a result of Farel remaining in a stationary position. At night, Robins is equipped with a bipap machine that works by maintaining a certain amount of air pressure within a mask that he wears while sleeping. The air pressure keeps the wearer's airway open, allowing him or her to breathe easily while at rest. A former waitress, Eileen's full attention these days is on her husband. Other than bi-weekly, one-hour long visits from a visiting nurse organization and occasional visits from a friend and neighbor who is an RN, Eileen is her husband's caregiver.  Farel is limited to the use of only his left hand these days. A uniquely programmed computer is available to serve as his voice. His functioning hand wraps around an extended wooden dowel that gently taps an icon on the computer screen. An audible command says, "I need a pillow," or "Please get me a drink of water," among a number of other requests.  "Most of them are outdated now," his wife says, indicating that he can no longer drink or eat. In spite of the outdated data, though, Farel smiles at his wife and teasingly taps out a command. The couple deals with the inevitable with grace and an appreciation for every day that dawns. Eileen seems to judge her husband's needs by only the look in his eyes and is quick to respond to any request. They still anticipate sunny days and special television broadcasts to watch together. Farel fights tears as he tries to find the words to describe how one prepares for life's end. When words don't come, his eyes tell the tale and his wife, who is now his voice, interpets. "We just take one day at a time and consider it the gift that it is," she says, with a squeeze of Farel's hand.

Meet the Man Who Can’t Walk, Talk or Use His Hands and Yet Runs a Multi-Million Dollar Charity

 

 

Avichai Kremer

The next time you consider taking a sick day, think about this guy. Avichai Kremer was 29-years-old and on top of the world. A native of Israel, he’d been accepted to Harvard Business School and was just beginning his studies within those ivy walls when the devastating news arrived.

After feeling numbness in his fingers, which made holding a coffee mug difficult, he was diagnosed with ALS – Amyotrophic Lateral Sclerosis — commonly known as Lou Gehrig’s disease, a degenerative condition in which muscles gradually atrophy, ultimately leading to complete paralysis. After nine years with the disease, Kremer is unable to move his arms, legs, or to speak. But his brain functions perfectly as does his brilliant mind, which he decided to put to very good use.

When he received the terrible news, Kremer retreated to bed depressed for several days, but upon arising, he decided he had to take action, both for himself and for the hundreds of thousands with his condition. He recruited friends from Israel, his Harvard classmates and professors who together founded the American non-profit Prize4Life.

Of course, as business school students, they had to put a capitalist twist on the project (which is ironic considering Chinese communist revolutionary leader Mao Zedong is believed to have had ALS!). Kremer and crew constructed a business plan, bringing their financial acumen and innovative spirit to the project focused on how to find a cure that’s evaded scientist for 140 years.

Kremer tells TheBlaze:

I was a young student at Harvard Business School then and the world was my oyster. To receive the diagnosis of a disease which is 100% fatal within 3-5 years on average, was incomprehensible. For a few days I simply couldn’t get out of bed. But I knew it was also an opportunity; an opportunity to use my business skills – and the skills of my HBS classmates – to make a difference. An opportunity to change ALS. An opportunity to show that hope is stronger than fear.

Early on, Kremer and his colleagues realized they needed to redefine the game. They knew that great breakthroughs come from unexpected places. But how to lure the top minds to research ALS? While other medical charities offer grants for ongoing research that may or may not succeed, Prize4Life believed a radically new approach was needed. As students of history, they realized offering inducement prizes that reward only successful results was the way to go. Kremer explains:

Inducement prizes worked for centuries to incentivize people — they attract attention to a problem and define what is needed to solve it. Furthermore, looking from the donors’ perspective, prizes are very appealing — you only pay for results!

Last year, they granted their first million-dollar prize that rewarded the scientist who developed a biomarker that tracks the progression of the disease cheaply and accurately. This means clinical trials will be less expensive and more efficient. This year, Prize4Life launched its second offer: one million dollars to whoever can develop a treatment to prolong survival in mice by 25%.
Prizes have driven innovation for a century. Most famously, the Orteig Prize encouraged Charles Lindbergh to be the first aviator to cross the Atlantic. Kremer says [emphasis added]:

I view Prize4Life as a start–up and myself as an entrepreneur. Entrepreneurship is about seeing an opportunity and seizing it. And we use our prize model to create markets and action, where there was none or little before. We are using our prizes strategically to lower the barriers to entry. We are helping find drug leads, making clinical trials more efficient. We want people to do good – we want this disease cured – but we also understand it’s a business and want people and companies to win, financially, for doing so. We don’t ask for any rights in any inventions that are made — we want the inventors to keep their full motivation to get to a real, viable product and make money.
While the goal of entrepreneurship is to capture value, usually monetary. For a man facing death, money is insignificant. Shakespeare knew it when his Richard the 3rd said: “my kingdom for a horse!” Hope is my currency of value. A purpose is another. Purpose to still make a difference even if there’s a chance you won’t be around to enjoy it. I get both from Prize4Life. Would I have done it if I wasn’t a patient myself? Probably not, unless someone close to me was a patient. Money is a powerful incentive, and a very convenient one being able to trade it for almost anything, but it can’t be traded for everything (like an ALS cure) and in those cases, a higher from of value capturing kicks in.

Kremer operates a censor between his eyes to type on virtual keyboard. A screen for guests communicates his words.

 

TheBlaze visited Kremer in his Haifa home, where he painstakingly communicates using his facial muscles to move a sensor between his eyes to type each letter on a virtual keyboard on the screen in front of him. What he lacks in motor abilities, he makes up for in mental acuity, creativity and optimism. He told Israel’s Channel 2 News: “Today is wonderful because I woke up alive. All the rest is a bonus.” [Hebrew link]

Kremer and his team have successfully raised $10 million over the past six years. We asked him to describe the challenge of running the organization across the globe headquartered in Boston in light of his physical limitations. Kremer says:

Doing everything is harder with my physical limitations. As you can see I can’t speak or move my hands anymore and I communicate by slowly typing with a sensor attached to my forehead and I need to move it for every letter. I cannot walk and am being fed through a tube to my stomach. Soon, as my breathing muscles weaken, I’ll need the help of a breathing machine. Still, my brain remains intact and with the assistance of modern technology I manage to run the organization. For every motor function that I lack I compensate with extra dedication, extra persistence, extra creativity, because I am working to save my life and the lives of the people who are being diagnosed today … who are going to get it next year. The disease is relentless and will keep coming, and will keep killing us, and we must be relentless too if we want to beat it. I am not going to leave any stone unturned.

That dedication is being recognized in high places. Kremer won the Dean’s Award at his Harvard graduation. His main goal then was to walk with his own feet to accept his diploma, which he did, to a standing ovation from his classmates.

Avi Kremer accepts M.B.A. and Dean’s Award from Harvard Business School, June 2006 (Screen shot from: Israel Channel 2)

Others are taking notice. Israeli President Shimon Peres said of Kremer: “Although people sometimes receive an extremely harsh sentence, the only option that we have is not to surrender.” And last year, Kremer received the prime minister’s prize for innovation from Benjamin Netanyahu.

Avi Kremer receiving award from Israeli Prime Minister Benjamin Netanyahu last year (Screen shot from: Israel Channel 2)

At the ceremony, his mother Hedva read the speech Kremer wrote, in which he said:

Regrettably, I can no longer speak. But I will not let my illness take away my voice. Leonard Bernstein once said, “In order to achieve great things, two things are required – a good plan and not enough time.”

“It’s about creating change,” colleague Neta Zach, who is the scientific director for Prize4Life Israel says. “To be around Avi is extremely inspirational.”
Kremer says the most important thing he wants people to know is, “We are racing against time to save hundreds of thousands of lives, and everyone can help.”
For more information on Prize4Life and ALS, visit their website.


http://www.theblaze.com/stories/meet-the-man-who-can%E2%80%99t-walk-talk-or-use-his-hands-and-yet-runs-a-multi-million-dollar-capitalism-inspired-charity/#