1.    Braille used less in today’s world
       SunHerald
       January 1, 2010

2.    Putting his goals into focus
       Omaha World-Herald
       January 1, 2010

3.    Human embryonic stem cells may help older people battle blindness
       Los Angeles Times
       January 3, 2010

4.    Blind man’s guide dog causing row at Bloomingdale condo building
       Daily Herald
       January 5, 2010

5.    Blind comedian dispels disability myths with laughter
       ABC7 Chicago
       January 6, 2010

6.    Oakland Schools reverses decision, will provide large print books for student
       Daily Tribune
       January 6, 2010

1.    Braille used less in today’s world
 
VICKSBURG -- The seven keys of the Perkins Braille Writer have unlocked a new world for Caleb O’Neal, an 8-year-old Beechwood Elementary second-grader.

"It’s like you get to function well," Caleb said. "The keys are kind of like writing and seeing, and they teach you how to learn."

Caleb is one of four visually impaired students learning Braille at the school with special education teacher Lina Jones. The Braille writer is a little like a typewriter.

"He comes home talking about the letters he’s learning and the words he was able to put together and his numbers," said Caleb’s mother, Nichole O’Neal. "I really like the program. I just want Caleb to be able to learn as much as he can."

Jones is certified in teaching children with visual disabilities and said Braille is an important skill for them to have. About 80 percent of what most people learn comes through their sense of sight, she said, and the visually impaired have to find other ways.

"You can imagine how hard and how long we have to work in order to learn," said Jones, 56, who was born with congenital cataracts and has limited vision. "You have to be strong, to fight every day. We’ve had to fight to keep Braille alive. Large print isn’t always feasible."

Fewer learning Braille

Statistics from the Braille Institute show a marked decline in the last half-century in the number of legally blind children who can read Braille, from 50 percent in 1960 to just 12 percent today.

Braille is not just for those who are completely blind. Anyone with a visual disability or who is considered legally blind -- 20/200 with best correction -- needs Braille, Jones said.

Vicksburg Warren schools have "about eight or nine" visually impaired students, said special education director Eddie Spann. Most are at Beechwood, he said.

"In Mississippi there are not a lot of teachers certified to teach Braille," Spann said.

"We are fortunate to have Mrs. Jones to provide that instruction. My certification also includes teaching the visually impaired, and I can read and write Braille as well."

Spann became SPED director in October, and his experience includes 13 years at the Mississippi School for the Blind in Jackson, the last six as director, administrator and vocational counselor.

He also has personal experience with visual challenges, having lost his right eye at age 12 in a basketball game.
Debate over Braille

Spann said there is an ongoing debate among people in the field over the use of Braille, when students should learn it and whether it should be mandated for the visually impaired regardless of their level in school. Some children, especially adolescents, are resistant and it becomes a battle, he said.

"If a child is born blind, of course we should teach him Braille. But if a child has usable vision, I support using that vision to the greatest extent," he said.

"We should not focus totally on learning Braille. We can do both -- promote Braille and develop their usable vision."

Federal law requires instruction that’s "appropriate" for each child, Spann said, which includes Braille "if it is determined that the child needs Braille," he said.

The decision is made by a group of people including the parents, teachers, school officials and specialists who work together to develop the child’s individualized education plan.

Spann said what the school district offers is Jones’ class for visually impaired children, not a "Braille program" per se.
The latter would include a staff of computer technicians, orientation and mobility instructors and other specialists.

Some of those services are provided either through agreements with the School for the Blind or contracted out with someone who visits the district "a couple of times a month or year," he said.

Integrating Braille

Jones works one-on-one with students who come to her room for a period each day. She integrates her lessons and activities with their regular work, such as spelling lists and math problems.

Kindergartner Jamie White, 6, likes to use the Braille caravan, a decidedly low-tech yet fun set of yellow blocks and high-contrast black pegs that can be used to make Braille letters and numbers.

The system works for both low-sighted children and those who need to feel the raised dots created when child places pegs in the holes.

Mixed blessing

High-tech developments have been a mixed blessing.

Besides the manual Braille writer Caleb and other students use, Jones has in her office a larger, more expensive embosser that is connected to her computer and can print text in Braille. The computer is also equipped with a speech program, so Jones can choose to have what’s on the screen vocalized through speakers.

There’s also closed-circuit TV that’s able to greatly magnify print materials on a monitor, she said.

But when the print has to be enlarged until a child is looking at just one letter at a time, and for children who may have certain progressive diseases that gradually limit their visual field until they are blind, Braille literacy may be the only way for a child to learn to read and write.

"The Braille writer is fun," said Jamie, who learned to make at least eight letters and write her name in about a month of working with Jones.

Jones and her husband, Mark, owner of radio station WVBG-AM, who was born blind, are the parents of a 6-year-old first-grader, Lensi, who has excellent vision and is a top reader at Bowmar Elementary.

Lina Jones is in her second year on staff at the school district, and before that served as a consultant to this district and as an itinerant teacher of the visually impaired in a number of districts in Louisiana.

http://www.sunherald.com/2011/01/01/v-print/2745175/braille-used-less-in-todays-world.html

2.    Putting his goals into focus
 
Wearing a T-shirt with "Visually Impaired" on it would help Steve Sabra when he runs marathons.

Such a warning could keep other runners from cutting in front of him and making him stumble or fall. And it could explain to onlookers why he sometimes knocks over the orange cones that mark the boundaries of a marathon course.

But it also would set him apart and draw attention.

Sabra is not comfortable with the trade-off.

"I thought about it," he said. "I think my pride kicked in. I didn't want to advertise it."

In Sabra's last few marathons (he has run 16 so far), friends, his son or race volunteers have either run or biked alongside him. Their goal: to keep him on his feet and away from curbs, medians, other runners, signs, construction barriers, trail markers, light poles ...

It doesn't always work.

In the Omaha Marathon in late September, Sabra took two hard falls--once after he got too close to two runners who were running in front of him, the second time at a sharp turnaround. When he runs, he wears gloves and knee braces that help him avoid scrapes and more serious injuries.

"Every step is an ambush," said Sabra, 55. "I trip over cones, curbs, chuckholes ... These things, to a well-sighted person, they are trivial. But to somebody like me, they are pitfalls, ambushes."

Sabra says, however, that he doesn't want a "pity party." Not only has he run through stumbles and falls and failing eyesight, he has done it after losing 100 pounds by cutting calories and working out almost every day.

Sabra is focused on a lofty goal: Qualifying for the prestigious Boston Marathon in his age group.

To do that, he must run a sanctioned 26.2-mile race faster than 3 hours, 45 minutes and 59 seconds--a per-mile pace of 8 minutes, 37 seconds.

Sabra's fastest marathon time so far is about 8 seconds per mile shy of that mark: 3:49:41 (an 8:45/mile pace), which he recorded in the Des Moines Marathon on Oct. 17.

Despite that, Sabra still plans to run Boston in April. He has unofficially qualified in the "Blind/Visually Impaired" category, which sets a 5-hour limit on finishing times. (In 2010, 17 people in that category finished the Boston race.)

Sabra said he would have preferred to qualify under the rules that apply to sighted people, but figured he should take advantage of the opportunity before he loses even more of his eyesight, which he said has greatly deteriorated over the past couple of years.

Sabra says he runs "with almost a sense of urgency. There's a small window of time I can do it at this level."
Now, he hopes to qualify for Boston in Boston.

Sabra has been dealing with vision problems since he was a teenager in his native Lebanon. He first noticed it when he was about 13 years old, at the movies with his buddies. He had trouble tracking them down in the darkened theater.

"I couldn't see at night," he said. "I was basically groping in the dark. Daytime, I was fine."

After high school, he was conscripted into the Lebanese army for a year. He told military officials about his poor night vision, but they made him serve anyway.

Others in his platoon were killed, but he made it through unscathed. He emigrated to the United States in 1977.

Sabra earned a bachelor's degree in architectural studies from the University of Nebraska-Lincoln in 1983 and a bachelor's in civil engineering from South Dakota State University in 1986.

With just one paper left to write for his master's degree in structural engineering, he found a job in Omaha, then went to work for the Nebraska Department of Roads in its bridge division in 1990. In 1993, he finished the paper and earned the master's, again from South Dakota State.

One Monday in 1993, after taking an engineer-licensing test over a weekend, he noticed that his eyesight had deteriorated "precipitously." He first thought his eyes were over-tired from the studying and test-taking, but a doctor at the University of Nebraska Medical Center diagnosed him with retinitis pigmentosa, an inherited, progressive eye disease. It often shows up as night blindness in a person's teenage years, then progresses, years later, to tunnel vision and, in some cases, loss of central vision as well.

Sabra stopped driving in 1995, but he started using vision-assistance devices at work shortly after the diagnosis. He has what looks like an overhead projector above his desk that transmits the image of construction documents and reading material onto a 32" monitor. He also has a hand-held magnifier that can zoom in on details. The type size on his desktop computer is set at 7x magnification, making individual letters in an e-mail appear two inches high on the screen.

At first glance, it's hard to tell that Sabra has trouble seeing. He doesn't wear his glasses all the time, carry a white cane or use a guide dog. He looks at your face and smiles when you greet him. In the Roads Department office in Lincoln, he runs a finger along cubicle walls to help him maneuver and greets his co-workers without bumping into them.

Sabra said he can make out silhouettes of people, but has difficulty distinguishing faces. He hesitates to address people by name, he said, because he doesn't like to get names wrong.

Over the years, he said, blind spots in his field of vision have gotten bigger, overtaking some of his peripheral vision, and his overall vision has become blurry.

"It's as if you're looking through a frosted glass constantly," he said. "I almost feel like I'm always in a room of fog."

Sabra still is able to do great work, said Kent Miller, a fellow engineer who has worked under Sabra for five years and who has biked alongside him during marathons. "He's actually a pretty amazing engineer," Miller said.

Sabra's outgoing personality also goes against the engineer stereotype, Miller said. "The joke is, the extroverted engineer is the one who stares at your shoes," he said. "Steve is a very good communicator ...

"In his case, he has strengths that more than make up for his limited eyesight."

Five years ago, Sabra, who is 5'11", was pushing 300 lbs. He had high blood pressure, high cholesterol and sleep apnea. He decided to start losing weight after he awoke one morning, thinking the family cat was lying on his chest. "But it was my double chin," he said.

Sabra had tried the Atkins diet, the TWA diet and Weight Watchers, but nothing worked for him.

"I would say he has a genetic predisposition to being a big person," said Pat Sabra, his wife of 30 years. "He ate what he felt like eating."

The Sabras were members of the YMCA, but Sabra didn't go very often--maybe once a week to do weights or run on the treadmill. Then he started working out for two and a half hours, five days a week.

It took him a year and a half, but he lost 100 pounds. His cholesterol level dropped, his blood pressure went from 138/90 to 120/70 and he stopped taking medication. Recently, his cholesterol has started to creep up, so he's back to taking cholesterol medicine, but only half as much as he used to take.

He still works out five days a week, but he does more treadmill running and elliptical training than weightlifting. Except for races, he runs solely on treadmills. His weight fluctuates between 187 and 192.

Sabra still must line up guide runners for himself for the Boston Marathon. He said he's looking forward to the race.

"I think of it as the crowning jewel," Sabra said. "You're in the company of elite athletes and runners. To be in the midst of such athletes, it's a joyful occasion, and I think of it as a privilege."

What he's not looking forward to, he said, is losing all his vision. It's not a certainty that he will, but there's no guarantee he won't.

"Losing my eyesight is not the biggest catastrophe. Not seeing to be able to provide for my family is a more urgent need."

Until then, Sabra hopes to motivate others to persevere despite whatever obstacles life throws out.

"If someone says, ‘If that guy can do it, I should be able to do it,' it's a force for good."

http://www.omaha.com/article/20110101/LIVEWELL02/701019931/1161

3.    Human embryonic stem cells may help older people battle blindness

A therapy derived from human embryonic stem cells may help millions of Americans battle a common form of blindness.
Advanced Cell Technology Inc. said Monday that it has received a green light from the U.S. Food and Drug Administration to begin a clinical trial to test its therapeutic cells as a treatment for dry age-related macular degeneration. The company plans to enroll a dozen patients in a Phase I/II trial, which would primarily test the safety of the cells and whether they are well-tolerated by patients.

Age-related macular degeneration is a disease in which the macula--in the middle of the retina in the back of the eye--is gradually destroyed. In the dry version of AMD, objects in the center of a patient’s visual field become blurry and they have trouble recognizing faces, according to this explainer from the National Eye Institute. Though there are treatments that may stall the progression of dry AMD, there is no cure. An estimated 10 million to 15 million Americans suffer from dry AMD, and that number is expected to rise as the population ages.

The scientists at Advanced Cell hope that these patients can be helped by the company’s retinal pigment epithelial (RPE) cells, which would theoretically replace the ones that have been destroyed by the disease. The RPE cells have restored vision in rats and mice with an animal version of the disease. In November, the FDA gave the company the go-ahead to test the RPE cells in children with a rare disease called Stargardt’s macular dystrophy.

The macular degeneration study will enroll patients at various sites across the country. So far, the Jules Stein Eye Institute at UCLA and the Ophthalmology Department at Stanford University School of Medicine are being considered, according to a statement from the company. More information about the trial will be posted at ClinicalTrials.gov soon, the company said.

As explained in previous Booster Shots posts, these RPE cells were derived from an unusual line of human embryonic stem cells. The stem cell line was created from a single blastomere cell that was extracted from an eight-cell embryo using a technique that does not require the destruction of an embryo. In fact, the blastomere extraction technique is commonly used in pre-implantation genetic diagnosis.

http://articles.latimes.com/print/2011/jan/03/news/la-heb-stem-cells-for-macular-degeneration-20100103


4.    Blind man's guide dog causing row at Bloomingdale condo building
 
When Iggie, a black Labrador, moved into Tim Spencer's Bloomingdale condo, it seemed a tough time was about to get better.

Spencer has retinoblastoma, a rare cancer of the retina that took his left eye when he was a toddler; he lost his vision completely two years ago.

His 3-year-old son Andrew is battling the same cancer and has had more than 40 surgeries to fight it, his dad said.

"I was an athlete and always wanted to be the dad who took my son to the park and threw him a ball, so I thought I'd at least be safer with a guide dog to take him out instead of using a cane," he said.

Spencer traveled to New York, and in November he graduated with Iggie from Guiding Eyes for the Blind, a group that trains guide dogs from birth.

The building where the Spencer family settled a month earlier, 1 Bloomingdale Place, forbids pets, but the condo association made concessions for Iggie under the Americans with Disabilities Act even before he arrived.

Things seemed to be looking up, Spencer said. Their new condo is near Andrew's school and wife Heather's work, and it offers indoor parking and security cameras.

"It's a safe place," Spencer said.

But then the notices started coming in the mail. And the phone calls from the condo board began, with complaints of too much barking from Iggie.

Today, the Spencers face about $300 in fines for violating condo rules. An attorney for the association said the family faces a hearing to try to resolve dispute.

But Spencer claims the allegations and fines are unfounded.

"I am getting harassed for a tool I use to function," Spencer said. "For the first six months, guide dogs go through separation anxiety. And he'll bark a bit because he's scared and in a new environment.

"But we were getting calls once while we were at Children's Memorial Hospital during one of my son's surgeries, and ... every week it's something different."

More training?

The barking stems from Iggie being left alone for too long, according to Pam Park, an attorney with Kovitz Shifrin Nesbit of Buffalo Grove, which represents the condo association board.

"This is not just one resident complaining," Park said. "The association has received several complaints from residents around the Spencers' unit because the dog is barking excessively.

"The dog is being left alone for three, four, five hours at a time. We would question whether the dog was trained to be left for such long periods of time," she said.

Spencer said Iggie is rarely left alone for more than two hours, with one exception being during Andrew's surgery just days after the dog arrived in November. He also said the dog is left alone primarily during daytime or early evening.

Still, he is using tips he learned from Guiding Eyes to try to alleviate the barking, such as leaving Iggie with a toy coated in peanut butter and leaving on the TV.

He said some neighbors have been supportive and even bought Christmas presents for Iggie. Only a few, he said, are complaining.

Wayne Rosmis, president of the condo association board who lives in the unit directly next to the Spencers, declined an interview and asked Park to speak for the board.

Park said the board is trying to respect Spencer's rights and be sensitive.

"We would suggest the dog be given additional training," Park said.

School can step in

Although students such as Spencer spend only 26 days training with their dogs at Guiding Eyes for the Blind, the canines have a much more rigorous regimen.

Students from throughout the country travel to the school to obtain a dogs like Iggie, which have been trained since puppies.

"We like to say that training starts from the time they are born," Guiding Eyes spokeswoman Michelle Brier said.

That starts with early socialization to get dogs accustomed to new sights and noises, like people in funny hats, traffic, construction and emergency vehicles, she said.

Later, the dogs are taught house manners, basic obedience and more socialization.

"Dogs are left in crates so they get used to being alone," Brier said. "Then, once they are considered candidates to be ideal guide dogs, they continue to train for another five months to a year."

Brier confirmed that Spencer contacted the school recently for more training tips. She said he's "doing his best to rectify the problem" and the school would send a trainer to Bloomingdale if complaints continue.

Becky Barnes, a Guiding Eyes staff member who helps support graduates and who is also blind, said she is skeptical that Iggie is barking excessively after such thorough training.

"I really don't think these people are being totally honest," Barnes said. "Dogs are dogs and they might bark occasionally, but they are trained for separation anxiety and to be alone. Plus, your dog is with you most of the time because you need it to function."

Spencer also has an attorney but said he hopes the condo association will see at the upcoming hearing that his family is working to respect their neighbors.

"Ultimately I want to get along with people," he said. "We are a friendly-family, but I don't like bullies, and that is why we are trying to make a stand."

http://www.dailyherald.com/article/20110104/news/701059713/#ixzz1ACjC0h5Y


5.    Blind comedian dispels disability myths with laughter

January 6, 2011 (CHICAGO) (WLS) -- A student at Chicago's Second City, Jim Bernardin, has big dreams.

Diagnosed with Stargardt disease 13 years ago, he has figured out how to navigate his future without much sight.

The 25-year-old just started taking improv classes at Second City.

Despite the fact that Bernardin cannot see, you would never know it by watching him perform.

"I look where your voice is coming from because my blind spot is in the central of my vision, so that's where the blind spot is, right where you're talking. So when I'm on stage and I want to give eye contact to somebody, I'm looking where the voice is," Bernardin said.

Bernardin got interested in performing when he was in high school.

"I couldn't play sports in high school, and all the other kids were playing sports, so I think this was a way for me to like be funny and make friends," he said.

Stargardt disease is an inherited eye disorder that causes loss of central vision. Jim and his twin sisters have the same disability.

"I wouldn't be doing this crazy comedy mission that I'm doing right now without the support of my family," Bernardin said.

Jim's uncle, Tom Bernardin, is the CEO of Leo Burnett and very active in Foundation Fighting Blindness.

"We're as close as families are," Tom Bernardin said. "What I see are some of the challenges that they so easily overcome. I learn from my nephew and my nieces."

"It's hard to call the fact that my nieces and nephews are legally blind a gift, so I don't want to call it that, but what it does, it opens up your mind and your heart," Tom Bernardin said.

"I love making people laugh and the more I'm here, the more I realize, 'Wow, this is something I could really do forever,'" Jim Bernardin said.

Video at link:
http://abclocal.go.com/wls/story?section=news/disability_issues&id=7883026


6.    Oakland Schools reverses decision, will provide large print books for students
 
The mother of a 14-year-old visually impaired Catholic school student says she can finally let go of her fears for her son’s future education.

Her son will have textbooks in large print as he needs and can look forward to a successful academic career.

Dina Vailliencourt was very worried about her son’s education after Oakland Schools stopped providing Sean large-print books at the beginning of the school year.

The denial came from Oakland Schools based on a legal interpretation of the state constitution by LaPointe & Butler, P.C., of East Lansing despite two federal laws that say school districts must provide a wide range of accommodations to students with disabilities in both public and private schools.

Kathleen Barker, director of special education for the 222,000-student Oakland Schools district, said an interpretation of the state constitution by former attorney general Jennifer Granholm said the intermediate school district didn’t have to provide "auxiliary aides" such as large-print and Braille textbooks to disabled students in private or parochial schools.

Following a published report, the district requested a second opinion from attorney Clark Hill of Birmingham, saying it was reviewing its policy on providing accommodations, officials said.

"We asked for the additional legal opinion to ensure two things: first that the Oakland Schools was in compliance with the law as it distributed public funds; and, if possible to find a way to continue providing the tools for special needs students to assure learning for all our Oakland County students," said Vickie L. Markavitch, superintendent of Oakland Schools. "If there is legal uncertainly, we want to err on the side of the students, whose education is our primary concern."

Oakland Schools reversed its policy Monday and said it would provide large-print textbooks to private school students.

Vailliencourt said she was thrilled with what Oakland Schools has promised.

Her son is a tad skeptical.

"Sean will believe it when he has the large-print textbooks in his hand," she said he said when he learned of the change in policy.

Oakland Schools officials say Sean, an eighth-grader at Guardian Angels Catholic School in Clawson, will be given his large-print textbooks next week.

"We were using regular print textbooks and were sometimes spending five hours a night studying ... and weren’t keeping up," Vailliencourt said. "At first it seemed we were going to be able to borrow the large-print books Sean needed," his mother said, referring to last fall when the large-print books were denied Sean. "But that didn’t work out. The school district only found large-print books for two of Sean’s seven classes.

"I started thinking about high school and looked at the textbooks Sean’s brother Jacob uses in high school. The print was so small I felt Sean wouldn’t be able to cope despite our help," she said. "I felt Sean especially would have difficulty understanding math and science which involve diagrams and scientific notation."

Jacob, 17, is a junior at Bishop Foley High School in Madison Heights where Sean hopes to attend next year.

She expressed her concerns about her son with attorney Richard Bernstein of Farmington Hills who said he would sue the district in federal court if it continued to violate the Individual with Disabilities Education Act as well as the Rehabilitation Act, section 504, of 1973 by denying Sean an accommodation.

There are thousands of disabled students in Oakland County’s 28 school districts.

The two federal laws supersede state law and require school districts provide accommodations to public as well as private school students with disabilities.

"I believe Mrs. Markavitch didn’t know" my son was being denied accommodation, Vailliencourt said Tuesday.

"She found out from The Oakland Press that Sean was being denied large-print books he needs. In the long run, if my son gets a good education and is self-sufficient it saves the government money," Vailliencourt added.

At one point, Oakland Schools said it could not afford larger-print books for Sean because property tax revenue has plummeted.

Vailliencourt said she feared denying her son accommodations was a "slippery slope" and other school districts would follow Oakland Schools and try to balance local budgets by denying disabled students accommodations.

"I just did what I felt was necessary for my son," Vailliencourt said.

Markavitch understood Vailliencourt’s motivation.

"I am grateful to the Royal Oak parent (Vailliencourt) for advocating for her son’s education and bringing this issue back to our attention," she said.

"I apologize to the family for the inconvenience our initial action caused and am very pleased that the additional research done will allow us to resume our previous practice of providing large print and Braille books to all Oakland County students."

http://www.dailytribune.com/articles/2011/01/06/news/doc4d2665c15bf4f251121494.txt?viewmode=fullstory