Monday, August 31, 2009

Technology Enables ALS Patient to Create Virtual Graffiti

The EyeWriter project is on ongoing collaborative research effort to empower PALS to create visual art using open-sourced creative technology. This project is of particular interest to Prize4Life, as it exemplifies the incredible power of crowdsourcing in an effort to improve the quality of life for ALS patients. The EyeWriter enables PALS to act upon the world according to their passions and skills, less limited by the effects of ALS.

Using creative technologies, the project enables ALS patients to design and project ‘virtual graffiti’ using just their eyes. In 2009 in Los Angeles, members of the Graffiti Research Lab, Free Art and Technology, Open Frameworks and The Ebling Group (open-source tech communities) began a project with legendary LA graffiti writer and activist Tony Quan. Tony was diagnosed with ALS in 2003. Like many PALS, Tony retains use of his eyes, but is paralyzed in the rest of his body.

In August of 2009, artists from London, Hong Kong, Madrid, Amsterdam and New York City, got together in southern California and began to work with Tony on a low-cost, open source eye-tracking system that would allow ALS patients to draw using just their eyes.

The result? The EyeWriter, a system constructed from material found in local hardware and electronics stores (see the videos here and here). The software is written using open-source libraries.

The system enabled Quan to draw his tag for the first time in over 5 years, which was then transmitted in real-time and projected outside on a wall he could see from his hospital window (see a diagram here). The team says its long-term goal is to create a network of software developers, urban projection artists, and ALS patients from around the world who are using local materials and open source research to make eye art.

The group also designed a “mobile broadcast unit,” a low-powered, networked bicycle capable of projecting onto the side of a building (or street sign, or train). The artists and technicians responsible for this “eye vandalism” promise that the manuals and software will be publicly available soon.

The group says that the low-cost system can allow ALS patients (with the help of their family and caregivers) to make visual art. Further, when combined with Mobile Broadcast Units (a low-powered, networked bicycle capable of projecting onto the side of a building (or street sign, or train)), a networked version of the EyeWriter can enable patients to have a large-scale presence in public spaces.

This is another compelling example of ALS patients who have turned a practice of ‘survival’ into the wholehearted pursuit of life.

by Meghan Kallman

Wednesday, August 26, 2009

Veterans Mistakenly Informed they have ALS

ALS has been in the national news lately due to a regrettable oversight by the Veterans Administration last week.

At least 1,200 Gulf War veterans across the country were mistakenly notified by the Veterans Administration that they suffer from ALS, the Associated Press reported (the New York Times also covered the story).

The letters, dated Aug. 12, were intended to notify veterans who have ALS of the disability compensation benefits available to them. The VA blames a coding error for the mistake.

At least 2,500 letters were sent out. Of those, some 1,200 were erroneous, according to the National Gulf War Resource Center. No one knows exactly how many letters were mailed to veterans treated at VA hospitals, and how many were a mistake.

Denise Nichols, vice-president of the National Gulf War Resource Center, said her group has received calls and e-mails from alarmed veterans in Alabama, Florida, Kansas, North Carolina, West Virginia and Wyoming.

Gale Reid of Montgomery, AL, Former Air Force Reservist, put herself through a battery of painful, expensive tests following receipt of her letter. Five days later, the VA admitted it’s ‘diagnosis’ was a mistake. She says she is angry: “I've been through a week of hell, emotionally, physically and financially.”

Former Sgt. Samuel Hargrove said that he cried Sunday after opening his letter. “I can't even describe the intensity of my feelings...With so many health issues that I already have, I didn't know how to approach my family with the news.” Hargrove is a father of two.

So, at first, he said nothing. Hargrove later discovered the mistake after talking with fellow veterans in the resource center and online. He is, to put it bluntly, angry as hell.

“Our fear was this could push somebody over the edge,” said Nichols, who was worried that the news could lead already fragile veterans to commit suicide. “We don’t want that to happen.”

“VA is immediately reviewing the individual claims files for all the recipients of this letter to identify those who received the notification in error," the VA said in a statement Monday night.

The Gulf War veterans group is urging the VA to reimburse any veteran who scheduled additional tests with civilian doctors. Reid reported that her follow-up tests cost approximately $3,000, though it may take weeks before she finds out how much her private insurance will cover.

The VA has already withstood heavy criticism this year. In June, Congress questioned it over flawed colonoscopies at VA medical centers in Florida, Georgia and Tennessee that may have exposed 10,000 veterans to HIV and other infections: read about it here and here. Last month, the VA Medical Center in Philadelphia disclosed that the number of cancer patients receiving incorrect radiation doses had risen to 98 veterans over a six-year period (see the story).

Prize4Life is disturbed by this egregious error, and believes, along with Reid, that this type of letter is a callous way to transmit information which could be misinterpreted as a diagnosis. While news reports state that the letter was to inform patients of ALS-related VA benefits, it was clearly interpreted as a diagnosis by some recipients. The VA website states that:

“VA employees are personally contacting these individuals to ensure they understand the letter should not be confused with a medical diagnosis of ALS, explain why they mistakenly received the letter, and express VA’s sincere apologies for the distress caused by this unfortunate and regrettable error.”

This mistake is particularly disturbing in light of the fact that the VA has not been traditionally responsive to ALS patients in need of rapid and intensive medical care; Veterans Today and the Charlotte Observer have run stories on veteran PALS who have faced tremendous obstacles in obtaining full VA benefits for their conditions.

The question of VA care generally is of larger significance and not the immediate concern of this post; however, increased risk of ALS has been statistically linked to veterans, and therefore deserves explicit and careful attention from the Veterans Association and all doctors who treat veterans. This error did not demonstrate any such sensitivity.

While Prize4Life finds this administrative oversight galling—especially given the severity of ALS and the lack of treatments and cures available—we hope that the nation can use this opportunity to raise awareness of the crippling effects of the disease. If you know any veterans who received the letter, please help spread the word that though for them this news was a mistake, for 30,000 other US citizens ALS is their reality. They too are fighting for their lives.

by Meghan Kallman

Wednesday, August 19, 2009

Public Reactions to "Sarah's Story"

Prize4Life was very pleased to welcome Sarah Ezekiel’s guest post last week. Sarah shared her perspectives on the making of “Sarah’s Story”, a public service announcement about ALS sponsored by the UK-based MND Association.

The ad was banned from British television several weeks ago by watchdog organization Clearcast, deemed too ‘shocking’ for public consumption. A heated controversy ensued regarding what should and should not be aired publicly. British newspaper the Telegraph published a story on the debate, and the BBC subsequently hosted a discussion between Sarah, the MND Association, and Clearcast, which can be found here. The Jewish Chronicle also recently covered the story: read it here.

We saw a very interesting tension emerge during this debate—that is, there seemed to be several debates occurring simultaneously.

The ALS community sees and feels (rightfully, we believe), that ALS is a brutal disease, that awareness can help lead to a cure, and that the pain inflicted by this disease is not ‘too shocking’ to be public, especially in comparison to other things that are publicly aired without controversy (such as rape, violence, warfare, etc). The ALS community argues in favor of airing the video, and frames its argument as a question of illness; we are discussing the clip in terms of ALS itself.

The second debate, it seems, is about the general standards which television employs to vet its content. The question is not about ALS specifically, but rather about whether there are images which are too controversial to be made public.

We see these conversations occurring on different levels—in effect, missing each other.

Let’s look at some of the comments on the Telegraph article. One woman objects to the video as inflicting unnecessary pain: “Why is it that some people believe they have some sort of God-given right to inflict a display of their misery on others? Just because you are suffering does not entitle you to illustrate your pain on TV or anywhere else.”

Another rebuts: “It is amazing that society doesn't allow something as strong as this message to be seen. We see acts of violence on TV daily. If I don't like what I'm seeing on TV, I change the channel. Simple. If diseases are publicized more, then there is the potential for raising more money to try and find a cure.”

One writer opposes the presentation of the woman in the ad, seeing it as falsified and dramatized. He writes: “I think the ‘advert’ is inappropriate. The woman is not Sarah Ezekiel but a model, Philippa Jonson. Sexy high heels and skimpy skirt all coming off. I do not understand why she is depicted as climbing backwards up a wall...Inappropriate. It fails to show what patience and endurance can achieve.”

An ALS patient responds, and in her response she connects the images in the video with a reality of living with ALS: “I was diagnosed with MND in October 2008. Since last August I have fallen over 10 times. Twice I have fallen against the wall and it was with such force that it felt exactly like I was being slammed against it, as it is shown in the ad. If you are falling over at speed and you encounter a hard surface, with no chance of stopping yourself, then that's how it feels...When a person with MND falls there is no chance to break the fall, your hands, arms and legs crumple beneath you and contact with the floor or other hard or sharp surface is always very shocking, there is nothing in your body that seems to act as shock absorbers...I can't crawl very well either, so in this respect too, the film is very, very accurate.”

It is clear in this exchange that the discussant are talking about very different things; the first writer objects to the sexualization and dramatization of the woman in the advertisement, while the ALS patient clearly sees the debate as a question of awareness regarding the real-life effects of a specific disease.

Another writer rebukes: “as for those commentators who think that the ad contains some reference to ‘sex’ or ‘sexy’, what sick minds you must have.”

At Prize4Life, we believe that the misunderstanding highlighted in these selected comments and in the larger discussion represents a fundamental lack of awareness about ALS’ effects on the body, and about the dehumanizing reality which the disease imposes upon its patients. For example, the connections between bared limbs and the physical effects of ALS on a patient in such a dramatization would be obvious if ALS were more familiar.

Following the media frenzy about the decision, Clearcast rejected the MND Association’s offer to air the video only after 10 pm and not following a family-oriented program. Clearcast noted, however, that it would allow the film to air if the footage of Sarah’s deformed limbs were cut. We find this point to be one of the most disturbing of the entire debate. Per Clearcasts’ decision, this is not a question of sexuality, provocation, or even the showing of someone else’s pain. It is a question of exhibiting ‘deformity’, something which the organization is unwilling to do.

Regarding this, another contributor observes: “It is incredibly disturbing for me that “[Clearcast] would allow the film if the scenes showing Sarah's deformed limbs were cut”--the fact that it is deemed necessary to hide images from the public eye of limbs that are ‘abnormal’ in some way only reinforces the marginalization that people with disabilities experience in our society. There are many people who find it uncomfortable to see images like this, but hiding them away only serves to reinforce the ignorance that feeds discrimination.”

We believe that Sarah’s story is about ALS, and that it should be discussed in terms of ALS, and that they key to creating this connection is through increased awareness of the disease. We support the MND Association’s decision to air this piece, and we hope that the conversation around it continues to foster increased understanding, exchange of ideas and, someday soon, a cure.

by Meghan Kallman

Thursday, August 13, 2009

ALS Patient Stephen Hawking Awarded Presidential Medal of Freedom

Stephen Hawking, an internationally recognized physicist and mathematics professor at Cambridge University in London, and an ALS patient for 40 years, was one of 16 recipients awarded the Presidential Medal of Freedom by President Obama last night. The Presidential Medal of Freedom is America’s highest civilian honor, originally established by President Truman in 1945 to recognize civilians for their efforts during World War II.

“Each saw an imperfect world and set about improving it, often overcoming great obstacles along the way,” Obama said of the honorees. “Their relentless devotion to breaking down barriers and lifting up their fellow citizens sets a standard to which we all should strive.”

67-year-old Hawking is a familiar figure in the ALS world, and best known in physics for his work on black holes. Scientifically, his name is connected with proofs that the universe must contain “singularities” and with radiation theoretically emitted by black holes (“Hawking radiation”).

Hawking, by any estimation, is no ordinary scientist. His wheelchair-bound figure has become emblematic of the human spirit pressing on against adversity, and has indirectly generated awareness of ALS and its repercussions for many years. Diagnosed at age 21, Hawking has been almost completely paralyzed for decades. He communicates through an electronic voice synthesizer and his computer.

Hawking’s book A Brief History of Time remained on the bestseller list for a record 237 weeks. As he conferred the honor Barack Obama said: “From his wheelchair, [Hawking] has led us on a journey to the farthest and strangest reaches of the cosmos. In so doing, he has stirred our imagination and showed us the power of the human spirit.”

On his homepage, when asked about the study of physics taking him “beyond physical limitations,” Hawking answered, “The human race is so puny compared to the universe that being disabled is not of much cosmic significance.”

An unobtrusive symbol of human perseverance generally, Hawking’s accomplishments clearly demonstrate that ALS patients do not merely survive: they continue to live. Congratulations, Dr. Hawking!

by Meghan Kallman

Tuesday, August 11, 2009

Guest writer Sarah Ezekiel blogs on "Sarah's Story" controversy

Prize4Life is pleased to welcome guest blogger Sarah Ezekiel! Sarah shares with us her perspectives on the making of “Sarah’s Story”, an advertisement about ALS sponsored by the UK-based MND Association.

The ad was banned from British television several weeks ago by watchdog organization Clearcast, deemed too ‘shocking’ for public consumption. A heated controversy ensued regarding what should and should not be aired publicly. British newspaper the Telegraph published a story on the debate, and the BBC subsequently hosted a discussion between Sarah, the MND Association, and Clearcast, which can be found here. The Jewish Chronicle also recently covered the story: read it here.

Prize4Life believes that the issue of ALS awareness is crucial; it affects the entire ALS community and has tremendous implications for research. Stay tuned for a subsequent blog post dedicated to the public reactions which have surrounded the controversy. Sarah shares her views below.

Everything was pretty straightforward for me until the age of 34. I was happily married with a beautiful little girl and pregnant with my much longed for second child. In February 2000, I noticed some weakness in my left arm and my speech was slurring. By April 2000, I had a definite diagnosis of ALS or Motor Neurone Disease (MND) as it’s called in the UK.

It happened so quickly; I was absolutely terrified. My marriage collapsed as I became progressively disabled. I couldn't physically care for my children or myself anymore, and spiraled into deep depression. I'm now a single, disabled parent who is totally dependant on caregivers for everything. I never expected my life to change so tragically. I often think that it's more painful for my family and friends than it is for me.

I am now 43 and have survived much longer than most ALS sufferers. I have lost almost all my mobility, as well as my speech. I use a program called E Z Keys on my laptop, which enables me to communicate and access the internet. Technology has saved me!

When I was asked to appear in “Sarah's Story”, the ALS advertisement that has been the subject of so much controversy, I didn't hesitate. Donna Cresswell from the MND Association showed me the story boards and explained more about the film. I liked the concept and felt that it was important for the public to see.

On the 3rd of July 2008, I found myself in a studio in Central London. My first scene was the end one, sitting in the huge wheelchair. I was positioned and had to keep very still, and when that finished, I was told that was it.

I asked whether I had just come there to sit in a wheelchair, feeling pretty upset. I asked the director whether I could try some other scenes because I wanted to show the deterioration that ALS causes to the body. I kept insisting until he agreed. I went home feeling pleased and amazed by the dedication and kindness of the creatives, director, actress and the crew, who gave their time for free.

The advertisement that we worked so hard on was recently banned from television by the British watchdog, Clearcast. They told us that it was “too shocking” for people to see.

I was, and remain, very disappointed with this decision. There are many shocking adverts being shown on British TV, so why can’t viewers witness the ravaging effect of a real disease on a real sufferer? That, the television censors have decided, is too disturbing for the public to handle.

Sarah’s Story is shocking but so is ALS. The advert is 90 seconds of powerful, disturbing imagery. It opens as a young woman walks into a room and is confronted by a wheelchair. As she gazes questioningly at it, a steel door behind her slams shut. Her body is immediately smashed against a wall. Struggling for breath, she is tossed around the room like a rag doll and left thrashing on the floor. Her clothes are stripped off by an unseen force, and her limbs, twisted and thin, convulse uncontrollably. In the final scene, she sits slumped in the wheelchair, unable to speak or move.

However, Clearcast claims that “even good-cause advertising is capable of causing widespread general offense.”

I feel that a graphic representation is the only way to ensure that more people are made aware of the horrific physical and emotional impact of ALS. The ban makes me feel as though ALS sufferers must be hidden away. Making the video was tough but so very, very worthwhile. I am extremely proud of it. And I'm afraid the only way to relay the true horror of ALS is in a shockingly vivid way. In fact, the film doesn't really convey the reality of this disease. The reality is far, far worse.

Just after being diagnosed, I spent three years wishing I were dead. Now, I spend every day being thankful that I am not. I am grateful for every moment with my children, although I do wish I could do more with them. My greatest wish is to be around to see them grow up. I am not ashamed to have ALS; I am just different now. I strongly believe that more awareness of ALS can help lead to a cure, and I will continue trying to raise awareness for as long as possible.

You can watch Sarah’s Story here, and I can be contacted via my website