ABILITIES EXPO ~ THE ABILITIES BUZZ ~ Friday, 1 November 2013
Abilities Expo is back in San Jose on November 22-24 with all the great products, fun events and informative workshops you've come to expect! The Walk and Roll Dance Team will be there along with Push Girl Tiphany Adams. You'll also meet Paralympian and bionic woman Jennifer French and see how her FES implants help her out of her wheelchair. It's all under one roof and we hope to see you there!
Read on for more on clinical trials, great products, disability in film, the skinny on nutrition and—for parents and caregivers of kids in wheelchairs—a brief survey.
At each of our shows, it is our goal to provide as many products and services as possible for ALL disabilities. If there is a particular product or company that is not represented at our events and you feel it should be, please let us know!
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Is A Clinical Trial Right for You?
Are you thinking about joining a clinical trial? Does it look like an attractive option when there are no other alternatives? The notion that a clinical trial is equivalent to health care is incorrect. They are very different. Your regular health care delivered by your physician is flexible to your needs and customized to treat your specific condition. A clinical trial is designed to advance medical research with specific goals and very strict protocol processes.
Participating in clinical trials can give you access to breakthrough treatments and cutting-edge medicine but they are no guarantee. Anyone interested in participating in a clinical trial should know as much as possible about the study and feel comfortable asking the research team questions about the study, the related procedures, and any expenses. For instance, understanding the basics of the research protocol can help you determine if you want to make the commitment of participating in the study. Protocol information includes the reasons for the study, the eligibility criteria, number of needed participants, schedules of tests, procedures and dosages, to name a few. This type of information and more is available from the National Institutes of Health website for clinical trials, www.ClinicalTrials.gov.
Speaking from more than 14 years of experience of being a participant in a variety of clinical trials for spinal cord injury, Jennifer French from the Neurotech Network presented a workshop at the Boston Abilities Expo on this exact topic. Chronicled in her recently release book, On My Feet Again: My Journey Out of the Wheelchair UsingNeurotechnology, French gives a participant perspective to the clinical trial experience and shares the lessons learned along the way.
Clinical Trials: How to Find Them & What You Need to Know workshop will be held at the Abilities Expo November 22-24 in San Jose, California. Learn about the basics of clinical trials, how to identify valid studies and how to beware of snake oil salesman. In this session you will get resources on where to find vetted clinical trials, questions to ask the research team and considerations before signing the dotted line. Plan to attend the workshop at the San Jose Abilities Expo on November 22, 2013 at 2:30 pm. Plus, afterwards Jen will be signing books with all proceeds going to Neurotech Network. Learn more at www.OnMyFeetAgain.org.
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Product Spotlight: Tobii EyeMobile & I-Series
Tobii ATI, a leader in AAC and assistive technology devices and solutions, has kicked it up a notch. We've watched eagerly in recent years as they applied their eye-gaze technology to laptops and video games. But, now—virtual drum roll, please—we see the debut of the Tobii EyeMobile, uber-cool tech that gives you eye-only control of your Windows 8 tablet.
The EyeMobile puts individuals with physical and communication impairments at the forefront of consumer technology. Now, navigating and controlling nearly any modern, off-the-shelf Windows 8 tablet can be done with the simple, natural and relaxed movement of the eyes.
"It's extremely rewarding to provide assistive technology to those who need it the most—allowing these individuals to communicate, surf the web and connect with friends and family, both online and in person," said Tobii ATI President Tara Rudnichi. "Our users have literally done it all with their eye tracking devices, from writing and publishing books, to participating in school plays, attending college and even creating and selling their own art."
Compact and lightweight to meet the demands of those on the go, the Tobii EyeMobile allows for completely hands-free access to Windows 8 apps, Internet, movies, music, e-books, social media and games on a tablet device. Your eyes take the place of a mouse or your finger and, by fixing your gaze for a fraction of a second, you are able to directly access all the functions and standard apps.
It gives users with spinal cord injury, muscular dystrophy, arthritis and Rett Syndrome the opportunity to live a richer, more connected and independent life.
The Tobii I-Series is the most advanced purpose-built speech-generating device for those with communications challenges. The I-Series harnesses the speed, power and accuracy of Gaze Interaction to allow people with disabilities to communicate effectively through voice output, environmental control, computer access, long distance communication and more.
The I-series was not designed as an AAC device for people who are just nonverbal. Since it is equipped with eye-tracking technology, it is also ideal for people with physical disabilities as well. The power of this tool to open doors is especially evident in the words of Tobii user Ryan Carter, who was thrilled the possibility of increased independence.
"Tobii has given me a tool that has changed my life," he said. "It has given me freedom to say whatever I want to say when I want to say it. I can now make phone calls and text, get on the Internet and look-up what I want to. I can control my TV with it – and that's a big deal for me! I can communicate quickly and effortlessly now."
The infrared cameras mounted on the screen pick up the activity of the cornea so that when the user stares at a phrase or symbol, that phrase or symbol is activated. From there, they can create sentences and express ideas that allow them to express themselves and effectively engage with the people around them. With these devices, people who were isolated by their communication disabilities can now thrive as individuals, creating social connections and actually building relationships.
The Tobii I-Series not only provides daily communication for those who need it most, but also empowers them with greater independence, a sense of inclusion and greater emotional health.
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Convaid: Help Us Help You!
Convaid's mission (which we've chosen to accept) is to provide the highest quality compact-folding lightweight wheelchairs. While we've grown to become a world leader, we understand that your input is crucial to our continued innovation and success.
You mission (which we hope you accept) is to help us better serve our families, understand our customers and meet their needs. We've created a short survey designed for families and caregivers of children with mild to moderate disabilities who own or wish to purchase a push wheelchair. If this describes you or someone you know, please take a moment and answer these brief questions. Your feedback is truly important to us and we look forward to welcoming you into our community!
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People Making A Difference
Presented by Chris Rohan, former Publisher of Disabled Dealer Magazine
People Making a Difference is a new column from Chris Rohan that highlights the actions of people determined to change the status quo.
On September 15, 2013 I was honored with an invitation to attend The First Annual Exceptional Ability Awards. Established by writer/director Michael C. Cooney, both the award and Cooney's production house, Exceptional Ability Entertainment, are committed to advancing diversity. Filmmaker Joey Travolta and Los Angeles rock icon Ozomatli lead the list of honorees. Additional honorees this year include, San Antonia Texas rockers, Girl in a coma, Man of the year: Cosmica Records Gilbert Gasteium, and the ground breaking Los Angeles blues rock band, Cityzen. Receiving the Women of the Year were the Push Girls.
As the honorees came forth to say a few words, one could only feel a sense of family among the crowd. This was the first annual event of this kind and hopefully there will be a second one. Exceptional Ability is committed to advancing multicultural ideals while championing the lives, hopes, dreams, and ABILITIES, of those who have been labeled as "different." They seek to change the world through the power of our voices and the quality of our product.
Here is Michael Cooney's story.
Changing Perceptions of Disability Behind and in Front of the Camera
By David Block
The Disability Cinema Coalition recently presented Michael Christopher Cooney, 43, with the 2013 inaugural Gateway Award for his pioneering efforts to change the public's perceptions of people with disabilities behind and in front of the camera.
In 2010, Cooney launched his Los Angeles based production company, Exceptional Ability Entertainment, which gives people with disabilities opportunities to work in the film industry. For Cooney, this endeavor is personal; he was born with Cerebral Palsy.
Tough Beginnings
Cooney originally attended the Cotting School for children with disabilities in Boston, Massachusetts. He was content there, but his mother was not. She believed that Cotting did not prepare its students for college, so she fought to have him mainstreamed.
A school district in Newton, Massachusetts accepted Cooney as a test case into their public school system. Cooney was able to go to school with "normal" children; his mother was thrilled, but for the first six months, Cooney absolutely hated it. "I got beat up every day," said Cooney.
At times, the beatings were quite severe; but this was the 1980s, long before anti-bullying campaigns were put into practice. "I kept asking my mother to send me back to Cotting, but she wanted me to tough it out." Worse, she forbade him to fight back; she opposed fighting. She wanted him to find alternative ways of handling bullies.
Because he was a big comedy fan, he began to tell jokes at school hoping that that would stop the other students from beating him up. His plan worked. "It was no longer 'Michael is the weird kid we don't understand,' to 'Michael is the funny kid who says things that other people don't say.' Cooney also credits the girls in general for stopping the bullies. They made those bullies leave him alone. Befriending girls was not a strategy to stop the bullies. "I always got along better with girls than with guys. I felt more comfortable around them."
A Role Model
After receiving his undergraduate degree from the School of Education at the University of Massachusetts/Amherst in 1995, Cooney worked with "at risk" children at Special E.D. schools. "I also taught English there," said Cooney. He was at home mentoring those students because many of them were ostracized like he was when he first attended public school.
Moving to California
In 2003, Cooney moved to Los Angeles. Four years later, he earned a Master of Fine Arts degree in writing at Otis College of Art and Design, Los Angeles. Around the same time, he met Joey Travolta, the older brother of acclaimed Hollywood actor John Travolta. Joey Travolta is the Creative Director of Inclusion Films, which helps people with disabilities break into the industry.
"After talking to Joey for 15 minutes, I knew that I wanted to work with him," said Cooney. "I really like him." Working with the elder Travolta inspired Cooney to launch his production company, Exceptional Ability Entertainment. His company makes corporate videos, music videos and independent films. They do electronic press kits, television/online advertising and fashion/red carpet events.
Cooney also coauthored the movie, Accidents (2008) with actor/screen writer/director/producer Raymond Martino.
For more information on Exceptional Abilities Entertainment, call (818) 422-0456.
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Abilities365.com Features SureHands Lift and Care Systems
Acting as a caregiver for a person with a severe physical disability is a labor of love. Though the emphasis is on the love, we can't gloss over the labor.
"I love my son," said Margaret said, whose child has significant mobility and developmental disabilities. "And of course, you do anything you can to help your children. But I do wish there was a way to care for Ronald that wasn't so hard on my back!"
That's where SureHands Lift and Care Systems come in. The North American distributor of Handi-Move International, SureHands offers a variety of lift system options to help people with disabilities and their caregivers. Whether the goal is to access the bed, bath, shower or toilet SureHands has a custom solution to make it happen. But getting from Point A to Point B isn't all. These lift systems can also help in changing clothes, catherization, physical therapy programs, standing and ambulation, taking a swim or even mounting a horse!
SureHands has a diverse product offering to help their customers best achieve their transfer goals. There are ceiling lifts, wall lifts, mobile lifts and pool lifts to facilitate the transport for individuals with disabilities. Popular in both home and clinical settings, these dependable lifts not only ensure the safety of the patient, but also relieve the physical burden on the caregiver.
SureHand's goal is to solve their customer's challenges and create greater independence. With their systems in place, people who would usually need assistance and handle the transfers on their own.
For more on SureHand Lift and Care Sytems, click here.
Check out more great products on Abilities365.com!
Abilities365.com is free to join and is an incredible resource for people with disabilities, caregivers and industry professionals. It's a website that allows you to not only find the latest information on companies like SureHands, but also to peruse products and services that appeal to the full spectrum of disabilities. There are white papers, webinars, videos, product discounts only available to Abilities365 members, and easy-to-use filtering which makes it simple to access the information that is specifically relevant to you.
But this site isn't designed to just be a passive research tool, it's a community. Interact with us, with companies, with non-profits and with other visitors. Weigh in on products and let the community know what you think! Have questions? Ask away! If it's product-related, the manufacturing company can help best. If your query is more general in nature, we have a team of ambassadors from the community whose wealth of experience could provide the answers you need. And all you have to do is join now.
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New Mobile App Provides 411 on Accessibility
by AXS Lab
AXS Map ('access map') is a crowd‐sourced tool for sharing reviews on the wheelchair accessibility of businesses, restaurants, entertainment centers, and other day-to-day destinations available online or via mobile web, as well as Android and iPhone applications.
For some it may be surprising to learn that as many as nine out of ten businesses on a city block may be inaccessible to people using wheelchairs and scooters. For many, inaccessibility is an endless source of frustration; lack of awareness, social attitudes and exclusionary design situate people with disabilities on the periphery of their communities and society at large. This can result in a "civil death," often a greater torture than living with the disability itself. This marginalization is reflected in numerous studies showing disproportionately high instances of unemployment and low income among people with disabilities.
For the 13.2 million people in North America who have mobility impairments, AXS Map aims to ease the burden of social exclusion by providing people with disabilities the freedom to be spontaneous about where they eat, shop, work, and play. Want to go to dinner and a movie, but unsure if there's an accessible restaurant near an accessible theater? Search AXS Map to get a literal lay of the land, complete with reviews and details about the particular levels of access; is the business technically accessible (e.g. no steps to enter the establishment, but the ramp is too steep), or truly accessible (e,g, the entrance ramp has an easily navigable incline). AXS Map aims to combine many different voices and points of view on one shared network, both creating a workable resource for and reinforcing a community of people who care about access and inclusion.
Jason DaSilva, the creator of AXS Map, is a Canadian filmmaker, who has had films in Sundance, on CBC, HBO, and PBS. He has also been recognized for his convergent media work receiving the "Emerging Innovator" award at the Canada New Media Awards in 2008. About six years ago, Jason was diagnosed with multiple sclerosis, and lost the ability walk over the course of five years. Because of the challenges and difficulties he faced getting around, he came up with the idea for AXS Map.
"I never thought about people in wheelchairs going up and down stairs and taking cabs," said DaSilva. "Only after it happened to me, did my eyes get opened up."
In 2011, Jason received a grant from Google Earth Outreach and a couple other foundations to build a prototype of AXS Map. After receiving this funding, Jason partnered with Kevin Bluer, a skilled technologist and entrepreneur, to build the first prototype, and Jason and Kevin discussed the project at "Maps for Good," part of the prestigious Google I/O conference, in June 2012.
Wendy Levy, Creative Director of the MacArthur Award-winning Bay Area Video Coalition, called AXS Map "game-changing. Jason has designed a story-driven, socially oriented platform for health reform and social justice for the disability community. Jason is moving his story world into a fully interactive space."
DaSilva and AXS Lab are currently refining and spreading the word about AXS Map, encouraging like-minded organizations and individuals to contribute to the database by holding mapping days in New York City. For more information and to start mapping, please visit www.AXSlab.org, or www.AXSmap.com.
Jason DaSilva is also the director of the newly released award-winning film, When I Walk.
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Nutritional Issues and Special Needs Children
by Claire Capaldi
If you are a parent to a special needs child and you're all revved up to attend an upcoming Abilities Expo near you, then you're probably ready to discover how findings of the latest research can make a big change in your child's quality of life. One area in which you are perhaps hoping to find the solutions you've been seeking, is that of nutrition. Many special needs kids have a nutritionist who sets specific guidelines for the challenges they are facing; for others, focusing on nutritional goals is a whole-family effort. Here we highlight some of the common nutritional risks special needs children may face and provide suggestions, where appropriate, on how to overcome these challenges. We must bear in mind that nutritional challenges are as varied as each individual child and our aim is merely to provide a general guideline for parents and caretakers.
Obesity: Children with limited mobility or those who have conditions like Down Syndrome can have low muscle tone or bone issues, thereby making it harder keep their weight down. It is vital to establish good eating habits from the start, limiting your children's experiences with sugary, salty and processed foods so that they can develop a taste for fresh, seasonal foods. It is likewise vital to inquire about any children's nutritional programs in your area which focus on the importance of healthy eating. If your child understands how sugar, fat and cholesterol affect their bodies, they are much more likely to embrace a healthy lifestyle than if they are simply told what they should and shouldn't be eating. Parents can help make shopping a fun experience for kids, encouraging them to read food labels and to choose healthy snacks (e.g. kids can be taught to shop for healthy snacks that have less than two grams of saturated fat or more than three grams of fiber per serving).
Children should also be encouraged to find an activity they love and feel confident doing; there are a host of fun, engaging adaptive sports they can sign up for, which will ensure they have a good time while performing a classic cardiovascular workout. The 'winner-loser' mentality should be thrown out the window, as long as kids are having fun in a safe environment.
Group exercise will also cure the problem of social isolation and help a child make new friends outside their traditional circle. Likewise, exercise will get kids away from the television and technology, which is a cause for concern for children worldwide. It is estimated that children in the US aged eight to 18 spend over seven hours a day on technology; it is now wonder that obesity is a problem for children of all ages, whether special needs or not.
Being Underweight: Children with special needs can be underweight because of various problems, including difficulties with swallowing. Some kids can have a particularly speedy metabolism, caused by conditions such as cerebral palsy, where muscular spasms burn up a significant number of calories. Swallowing problems (dysphagia) are an issue which needs to be diagnosed by a therapist. In mild cases, the therapist can work alongside your child to improve the swallowing mechanism; in serious cases, a feeding tube may be necessary. The first step for most parents whose kids don't have a hearty appetite is usually experimentation; trying out an assortment of foods that are most likely to stimulate the palate and provide adequate nutrition. If your efforts are proving unfruitful, vitamin supplements can be an ideal way to ensure a child's daily requirements are met.
It is also important to look beneath the surface and analyze whether a child's lack of appetite can be caused by an underlying issue such as depression. This condition is characterized by a lack of interest in activities and hobbies a child used to enjoy, a lack of energy and an avoidance of social occasions and interaction. If depression is suspected, it is vital to obtain help from a psychologist or psychiatrist, who can suggest successful therapies such as cognitive behavioral therapy, medication or a mixture of both approaches.
Having a Complex Relationship with Food: Often, a child with special needs may face specific barriers to having a healthy relationship with food. For instance, a child with autism spectrum disorder may have an intensely negative reaction to particular textures, tastes or colors. Children with Down syndrome, meanwhile, may prefer softer foods because of difficulties encountered when chewing or swallowing. If a child refuses to eat items outside a select list of foods, the importance of a good supplement may again come into play. Many parents report that simply getting their child to eat at all is a big achievement and this should remind us that nutrition should be approached on a step-by-step basis, and that every 'small victory' should be celebrated to the full.
Side-effects of Medication: Some 75% of kids with special needs take medication; some of the latter, especially anti-depressants, anticonvulsants, mood stabilizers, etc., are linked to weight gain. It might therefore be worthwhile for parents to speak to their child's physician, to discover if there are alternative medications with lesser side-effects.
Genetic Factors: It is vital that parents be aware of the link between genetic factors and obesity. The following syndromes, for instance, may place children at a higher risk for weight gain: Down syndrome, Spina Bifida, Autism Spectrum Disorder, Prader-Willi syndrome, Cohen syndrome, Carpenter syndrome, Borjeson syndrome and MOMO syndrome.
Overcoming the biggest nutritional challenges of special needs children is a complex issue that is sometimes within and sometimes beyond a parent's grasp. Yet to the extent we can, it is vital to ensure that our children enjoy the colorful, flavorful, rich-textured world of healthy food, and to get their hearts racing to the inviting rhythm of sport and life.
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Upcoming Expos:
San Jose
November 22-24, 2013
San Jose Convention Center
Los Angeles
Feb. 28-Mar. 2, 2014
Los Angeles Convention Center
Atlanta
March 14-16, 2014
Georgia World Congress Center
New York Metro
May 2-4, 2014
New Jersey Convention & Expo Center
Chicago
June 27-29, 2014
Schaumburg Convention Center
Houston
July 25-27, 2014
Reliant Center
Boston
September 5-7, 2014
Boston Convention and Exhibition Center
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Abilities Expo
2601 Ocean Park Blvd., Suite 200
Santa Monica, CA 90405 US
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