January 2012

From Science Fair Project to Life-Changing Prosthetic

Katherine Bomkamp with her science project prosthesis

While still in high school, Katherine Bomkamp came up with the idea of a prosthetic device that eases phantom limb pain in amputees. With determination and a bit of creativity, she demonstrated that a good idea trumps technical knowledge, and that nothing is impossible with a dose of determination.

It all started in Maryland, where Bomkamp was a high school student at a magnet school. Her father is a disabled Air Force veteran, and while in a waiting room at the Walter Reed Army Medical Center in Washington, D.C., Bomkamp listened as amputee soldiers from Afghanistan complained about phantom pain. Phantom pain is a condition that causes pain in the area of the missing limb. Normally, people experiencing phantom pain are prescribed antipsychotics and barbiturates, which are both highly addictive and very costly.

“They would tell me their stories, and phantom pain kept coming up,” stated Bomkamp “So I wanted to see if I could eliminate the need for those drugs holistically.”

Although she lacked engineering and medical expertise, when her chemistry teacher announced a school wide science fair, Bomkamp decided that her lack of knowledge wasn’t a roadblock to creating a solution. Thinking back to the soldiers she met at the clinic, she decided to try to find a way to give back to those who gave so much.

“My thought process was: When I pull a muscle, I apply heat to it,” explained Bomkamp. “If I applied the same concept to treating phantom pain, I thought that could work.”

Her approach was to email engineering professors at local universities and ask them for help. Their response was overwhelming, and after several offers Bomkamp chose nearby University of Maryland. Every Friday she traveled to the college campus to meet with Professor Gilmer Blankenship and lab manager Jay Renner, both with the Electrical and Computer Engineering department.

“They taught me electrical engineering from the bottom up — electrical programming, heat wiring,” she stated. “Basically, everything, they had to teach me.”

Together, they came up with a crude prototype for the Pain Free Socket, using heated socks for a heat source. After the prototype, Bomkamp continued her grass roots approach to find someone who would take her seriously and help build the prosthetic. The task was challenging, as most prosthetics cost over $15,000. According to Bomkamp, many of the companies she reached out to dismissed her offhand by saying, “This won’t work, you’re just a kid, don’t waste my time.”

Determination prevailed, and with the help of Jake Godak of Chico, CA prosthetic supply company Cascade, she acquired a custom built socket and leg. In the newer prototype, ribbing cable replaced the heated socks and a thermostat was added to control the amount of heat received from the device.

Now a student at West Virginia University, Bomkamp has started her own company, where she is working on new prototypes for the socket, including one that can be controlled by a cell phone application. The device will begin testing after her patent is approved, and she is in negotiations with companies for licensing rights once the Food and Drug Administration approves her final prototype.

What seemed like an impossible feat was made possible with the naive determination of a high school girl and the assistance of engineering professionals. Now, Bomkamp hopes to receive a small percentage of the profits as royalties if her device proves to be successful.


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British Adventurer Embarks on Trip Around the World in a Wheelchair

Andy Campbell is a British adventurer who refuses to let a little thing like needing a wheelchair get in the way of his dreams. In fact, Andy is about to embark on a journey like no othe–circumnavigating the world using his arms. His journey will take two years and involve his wheelchair, a paraglider, and a kayak. The trip is a fundraiser to support a non-profit group dedicated to making outdoor adaptive equipment available to those with disabilities who could not otherwise afford it.

Eight years ago, Andy fell during a rock climbing expedition and since then has had to rely on a wheelchair. Despite the injury, Andy regularly rock climbs, skis, kayaks, paraglides, and scuba dives. But disabled athletes have more than their disabilities to keep them from pursuing outdoor sports. The average off-road wheelchair comes with a price tag of $3,000, and an adaptive climbing harness costs about $1,400.

Realizing that most people cannot afford adaptive gear, Andy is setting off on a two-year journey that will begin in his home city of London. He will travel 30,000 miles before returning home. His plan has him crossing Europe and Asia with his wheelchair, paraglider, kayak, and two assistants to help with the most difficult terrain. Then he will fly across the Pacific Ocean to North America, where he will begin the second leg of his journey from Alaska to the Gulf of Mexico. That route will have him kayaking the Missouri and Mississippi Rivers to reach the Gulf, and then roll his specially designed wheelchair down the Pan-American Highway.

Andy’s goal is to raise $1.54 million for his new charity, the Chutkara Initiative. Funds raised from his adventure will be used to provide adaptive gear to others that may want to follow in his path. You can follow his adventure through his website (pushingthelimits.com), or cheer him on through Facebook (facebook.com/andycampbell.13) and Twitter (https://twitter.com/andy_campbell).


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Living with a Disability: A Global View

Disabled Indian citizen

It’s easy to assume that the rights and benefits available to disabled citizens in the United States might be the norm, but in some areas of the world, a disability is a life sentence–a “crime” punishable by the loss of basic rights like education, employment or community participation. In many countries, a disabled family member is considered a burden or a shame, or the community lacks any resources for those with disabilities to lead productive lives. But many countries are working to end stereotypes and provide accessibility and opportunity to all of their citizens. Here are a few countries that, with the help of volunteers, advocates, and non-profit organizations, are taking action to ensure that all their citizens have equal rights.

India has made leaps and bounds in recent years with the introduction of Sarve Shiksha Abhiyan, or Education for All. The government implemented the Right to Education Act in 2010, which makes discrimination in the schools illegal.

Despite the laws in place and the country’s goal of providing education for all children, there are still shortcomings that need to be addressed. For example, Braille libraries and audio books are scarce. Also, a lack of teachers trained to instruct children with disabilities means that many in rural areas are still not properly served.

New initiatives have been started to raise awareness of disability rights in this west African nation. Cameroon has many more centers and rehabilitation services available for those with various disabilities than it did just ten years ago. In 2010, Cameroon passed a law that addresses protection for people with disabilities.

However, only 2% of children with disabilities receive a formal education in Cameroon. The classrooms are not accessible, and there is a lack of trained educators to accommodate students with disabilities. Finding healthcare for disability related health problems is challenging as well.

The government of Togo has been making considerable progress in their laws regarding equal rights. The Ministry for Social Action has a department to represent people of the country that have disabilities. In 2004, a law was passed that gave social protection to disabled people. Last March, Togo ratified the United Nations Convention on the Rights of Persons with Disabilities. Social efforts have been made by non-government groups to raise awareness, and these efforts have been well received, providing a more open-minded community environment.

While the laws in place are a great start, improvement is still needed to change attitudes toward the disabled in Togo. An agricultural community where many work in the fields, it retains a social stigma toward  those with disabilities.

Organizations like Handicap International and the Burundi Disabled People’s Organisations Network have been working diligently to raise awareness and change people’s perception of disabilities in this tiny African nation, one of the poorest in the world. Less than a generation ago, children with disabilities (referred to as ibimuga, or “broken pots”) were hidden by their families, so that the community would not consider their families cursed.  But in 2010, the government began funding rehabilitation centers and income-generating projects for disabled citizens.

Burundi still has no laws or policies to ensure the rights or well-being of those with disabilities. While private organizations are working to assist Burundians, little is being done beyond their efforts. A telling example of this: the office in the government department that assists the disabled is located on the 3rd floor of a building with no elevator.

What’s Needed?
Although many organizations and governments look for financial assistance to improve the lives of people living with disabilities worldwide, there are also other ways to help these countries. Nations that provide financial aid to these governments can press them to ratify the United Nations Convention on the Rights of Persons with Disabilities, and can include the needs of the disabled in their diplomatic negotiations as well.

Disabled Africans playing soccer


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Accessible Gaming: Why Don’t We Hear More About It?

image from the game Dragon Age

Blogger Jacqueline Geller recently posed a question to readers on the site ComplexityGaming.com: “Is game accessibility something that should be discussed more often within the video game industry?

We wonder, why it isn’t? It’s not that accessible gaming is not mainstream, thus unknown to most gamers. As video game popularity grows, so does the interest in accessible gaming, and developers have definitely taken notice.

According to Media Access Australia, there are mainstream gaming options and new access initiatives that allow gamers, regardless of ability, to enjoy interactive gaming. Mainstream games such as Wii, Xbox 360, Nintendo and Sony PlayStation 3 offer a variety of gaming platforms tailored to players with specific needs. Many games, such as Dragon Age: Origins, consider accessibility as part of their design.

In 2009, AbleGamers.com presented video game developer Bioware with the “Mainstream Accessibility Award” for Dragon Age: Origins, giving the game a 9.8 out of 10 on their rating scale. Accessibility features include multiple levels of subtitles, the ability to use either the keyboard or both mouse buttons to control the characters, the ability to pause the game quickly regardless of the battle (for cognitive impairments), and easy to read, colorblind-friendly fonts. The only issue with the original game was small fonts, and the company immediately addressed the issue so that vision impaired players would have ease of play as well. Few companies go as far above and beyond to make sure that the gaming community is open to all players, regardless of disabilities or impairments.

Other games can be modified to be accessible, such as AudioQuake, which is accessible to players who are visually-impaired or blind. AudioQuake was the first publicly available, mainstream, first-person shooter game that was accessible for the blind and vision-impaired. Today, AudioQuake development has been turned over to the community for development.

There’s more than enough accessible gaming to warrant more visibility in gaming communities and leagues, and there are, in fact, some online communities that focus on accessible gaming. Those gaming communities include: AbleGamers (ablegamers.com), SpecialEffect‘s accessible GameBase (gamebase.info), Deaf Gamers (deafgamers.com), Assistive Gaming (assistivegaming.com), and the International Game Developers Association’s Game Accessibility Special Interest Group, or IDGA GASIG for short (igda-gasig.org), which provides news, reviews, and information about the latest accessible games.

While it’s good to know that there are places in cyberspace where gamers with disabilities can talk about the newest game, it would be even better if such gamers could go on any gaming community and hang out or join gaming leagues without feeling out of place. Hopefully, it’s only a matter of time.

For more stories from our blog on accessible gaming, see also:


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Tracking Wolves with an All-Terrain Wheelchair

On a glacial ridge overlooking 1,400 acres of forest and wetlands of Treehaven in Tomohawk, WI, Meg Lynch and several other University of Wisconsin-Whitewater students are out and about in the snow-covered forest, learning to identify and preserve wolf tracks. In the past, Meg would likely not have been able to participate in the field study portion of her biology program. But a grant has made possible the purchase of a new, all-terrain wheelchair with four-wheel drive that easily tackles the brush and snow.

“I’m grateful to have this chair, because I wouldn’t be here without this chair,” stated Meg, who playfully calls herself “Megatron” when she is in the all-terrain wheelchair. In the past, Meg had to rely on walkers and wheelchairs that just could not handle the field and forest requirements of her biology program.

UW-Whitewater is proud of being accessible to all students. Last year an annual two-week field trip to Yellowstone National Park included several wheelchair users. Whitewater faculty and staff utilized portable walkways and other adaptive equipment so the students could participate outside with their fellow students.

In Treehaven, the class is learning how to track and account for wolves in their natural environment. Wolf expert Dr. Jim Halfpenny is assisting Professor Dr. George Clokey in giving the students an extraordinary opportunity to learn valuable field techniques. Dr. Halfpenny specializes in this type of work, and came from Yellowstone to help with the project.

After the training, the students will be helping the Department of Natural Resources with a wolf survey in Cable, WI to determine how many wolves there are in the state. “It’s certainly nice to have a young bunch of students from the university working on these. As we do go forward to delisting wolves, we know we’ll have a cadre of trained people out there,” added Halfpenny.

Meg is not quite sure she will pursue fieldwork post-graduation, but she is looking forward to reviving her “Megatron” role as she heads to Yellowstone for a similar ecology course this summer.


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Researchers Discover Second ‘Culprit’ Gene Linked to ALS

Recently, Northwestern Medicine researchers discovered a mutated gene that causes the breakdown in the recycling system for cells in the brain and spinal cord that causes ALS (amyotrophic lateral sclerosis, commonly called Lou Gehrig’s disease). Now they have done it again, finding yet a second gene that may help lead to treatments for those living with the disease.

Patients with Lou Gehrig’s disease have proteins that build up abnormally in the motor neurons of the spinal cord and cortical and hippocampal neurons of the brain. In a healthy system, there is a recycling process that removes and replaces damaged proteins. Just a few months ago, the researchers found that the mutated gene ubilquillin2 was a problem, and the new research finds that another gene, sequestosome1, is also at fault. These two broken pathways cause the abnormal buildup of damaged proteins and the degeneration of the neurons in patients with ALS.

“Now that we have two bad players, it shines more light on this broken pathway,” says Dr. Teepu Siddique, a professor at the Davee Department of Neurology and Clinical Neurosciences at Northwestern’s Feinberg School of Medicine. “This gives us a clear target to develop drug therapies to try to fix this problem. It strengthens our belief that this broken system is at the heart of ALS.”

While this is great news for those with Lou Gehrig’s, it also may have a positive impact on treating other neurodegenerative diseases characterized by damaged proteins, such as Alzheimer’s disease, frontotemporal dementia, and Parkinson’s disease.


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Paraplegic Passenger Left to Suffer on JetBlue Flight

jetblue plane on snowy tarmac

Jimmy Brown, a 32-year old Staten Island resident, was one of many trapped for over eight-and-a-half hours on a runway at Bradley International Airport in Hartford, CT during an unexpected October snowstorm that had 23 planes make unplanned stops at the airport. While the other passengers at least had the option of using the restroom, Brown was forced to sit and suffer on the plane, which did not have handicap accessible facilities.

The passengers of JetBlue Flight 405 were headed to Newark, NJ when the unexpected storm hit, and they were forced to land in Hartford. The small airport was not equipped for the amount of planes on the tarmacs, and intermittent power outages made refueling and unloading passengers difficult.

Several years ago, Jimmy Brown suffered from a diving accident that left him paralyzed from the waist down, and he requires a wheelchair for mobility. While the other 100 plus passengers were surely uncomfortable being forced to sit in a small plane for eight and a half hours, Jimmy Brown and his wife had to deal with more embarrassing issues.

“She saw what her husband went through,” said Brown of his wife. “’He can’t get the circulation he needs. He needs other people to get up and then he gets humiliated on a plane. He’s got to pee in his own seat.’ I mean, this stuff is terrible.”

JetBlue replied to passenger complaints by issuing a statement that “we would have preferred deplaning much sooner than we did, but our flights were six of the 23 reported diversions into Hartford, including international flights. The airport experienced intermittent power outages, which made refueling and jet bridge deplaning difficult.”

JetBlue has done little to make amends for Mr. Brown. The airline said it would refund the fares of the stranded passengers, but two days after the flight Brown had still not received a refund or apology. Instead, JetBlue gave him a $30 voucher for McDonalds.


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What Is SOPA, Why It Matters, and Top Websites Fighting Back

If you’ve been on the Internet at all today, you may have noticed a few things that are a bit out of the norm. Google has a giant blackout bar for its logo, Wikipedia, Mozilla and several hundred other sites display blacken home pages, and “On Strike” pages are popping up all over Facebook.

So why is this happening? It is all because of two bills currently under debate in Washington. SOPA, the Stop Online Piracy Act, is a bill introduced in the House of Representatives in October. A similar bill, PIPA, the PROTECT IP Act, is in the Senate. The aim of both these bills is to fight the online piracy of copyrighted materials like movies. In order to fight piracy outside the U.S., the bills seek to cut off access to sites that host these materials or in any way provide services to them. And the far-reaching arm of SOPA and PIPA is what is causing all the commotion on the internet today.

Both supporters and opponents of the bills agree that online piracy is a bad thing. Its backers, which include media companies and Hollywood industries, would like to stop media piracy on the Internet. The bills target overseas websites that cannot be otherwise controlled by U.S. law. But opponents of SOPA and PIPA counter that the bills will lead to widespread censorship on the net, especially because they do not provide an adequate process for accused sites to fight allegations. The result, they say, would be an immediate, drastic shutdown of many sites that have become part of our daily lives. In the words of Google’s public policy director Bob Boorstin: “YouTube would just go dark immediately. It couldn’t function.”

Detractors also point out that the bills fundamentally misunderstand the paradigm shift in the way media such as music or movies are shared and marketed today. One notorious example of an activity the bill would criminalize is the YouTube videos that turned Justin Bieber into a famous pop star. The fact that he posted video of himself singing covers of copyrighted music, opponents of SOPA and PIPA contend, means he could be prosecuted as a felon – a possibility that is disturbing to anyone who has posted a birthday party or talent show online.

The White House has already come out against SOPA and PIPA, and the bills have lost some of their key supporters in Congress. Websites are hoping that today’s demonstrations will help turn public opinion – and leaders in Congress – away from these bills. What is your opinion on these two bills? Although some of their websites are down due to high traffic today, you can find contact information for your senators and representatives at https://www.usa.gov/Contact/Elected.shtml. Call and let them know your opinion on the two bills.

A Few Sites Taking Part in the Blackout:








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Mom Is Awarded for Helping Her Son and Her Community

The Shire Brave Awards Winner Christine Muller with son Ben

Ben Muller’s desire to play soccer after college, despite being born with muscular dystrophy and requiring a wheelchair, created unexpected opportunities for other young adults with wheelchairs to live independently. Together, he and his mother formed the Independence Foundation, a non-profit organization that provides recreational opportunities and independent living for young people with disabilities. Recently Ben’s mother, Christine Muller, received international recognition for these accomplishments in the form of a Shire BRAVE award.

The Shire Brave Awards

When Ben Muller was born 27 years ago, his parents were prepared to be his caregivers for life. Ben was born with Duchenne muscular dystrophy and would need a wheelchair to accomplish basic day-to-day tasks that most people take for granted.

“Twenty years ago, we envisioned that we would be caring for Ben for the rest of our lives,” Christine Muller, said. “We did not envision he would be able to go to college.”

Despite his parents’ concerns, Ben graduated from Edinboro College in Meadville, PA where he found a new passion for soccer while attending classes. The school had over 40 students with wheelchairs, allowing a unique opportunity for the sport.

After college, Ben wanted to continue playing soccer in his home town of Elma, NY. With the help of his mother, he was able to form a league, and eventually a non-profit organization so that the league could have the necessary insurance for liability purposes.

Christine Muller's Independence Foundation

Ben and his mother didn’t stop there. Ben’s desire for independence led the non-profit organization to go further than just recreation, and three houses were opened to allow young adults with disabilities an opportunity to live outside of their parents’ homes in an independent environment, instead of in nursing homes or group homes, where their independence is sacrificed for the ease of staff.

Seeing how much his mother did for him before and after college, Ben decided to nominate his mother for the Shire BRAVE award. The award is sponsored by the global bio-pharmaceutical company Shire, and is meant to recognize people that act with respect, dedication, courage and patience. Out of 400 nominations worldwide, Christine Muller was one of ten chosen for the award and the $10,000 prize that accompanies it.

The Shire Brave Awards Committee

As you might expect from a mother who gave so much to both her son and her community, Christine plans to use the money to continue helping others who face the same challenges as Ben.

According to Christine “The best part of the award is it all came about because my son thinks I’m doing something pretty amazing.”

Spoken like a true Super Mom.

The Shire Brave Awards Winners


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Short $1.30, Man Denied Thrift Store Wheelchair Purchase

Jim and Carolyn Turner Used wheelchair buyers

A thrift store in Jacksonville, Florida issued an apology to a regular customer who was denied the purchase of a used electric wheelchair for his disabled wife when he was $1.30 short. Along with the apology, the store gave the wheelchair to the man at no charge.

When Jim Turner visited his local thrift store, City Thrift, on the outskirts of Jacksonville, he found a used electric wheelchair for $399.90. Turner’s wife, Carolyn, was in need of a new wheelchair, as hers was no longer working. The new chair would allow Carolyn to get around, complete basic household chores and get some time away from the house – things most people take for granted.

Turner withdrew $400 from the bank to purchase the wheelchair. Assuming that the store was a charity thrift store, he was taken by surprise when the total price came to more than he had anticipated, and he found he was $1.30 short. He offered to come back with the money, but the manager on duty told him he could not have the wheelchair.

“I was embarrassed; they acted like I was asking for charity. I am not a charity case, just didn’t take enough money. I can’t believe they can’t give somebody a break for a wheelchair,” stated Turner.

When asked about the transaction, the store supervisor expressed her regret, and said she would have given Turner the extra change he needed had she been aware of the situation. City Thrift’s corporate office stated, “One of our cashiers was ill-advised of our policy and did not call on the front store supervisor…. The home office will look into the matter because we want our customers to be happy…. Again we apologize to Mr. Turner.”

City Thrift is a for-profit thrift store that buys donated items from American Veterans for resale at a profit. When Turner came back to the store the following Friday, he received an apology and was given the wheelchair at no charge.

Used wheelchair Jim Turner tried to buy


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