In Spring 2001, I stopped by a school district office on a whim and put in an application to be a substitute teacher - but that’s when the wheel of fate began to roll. Soon, I found myself face to face with a 12-year-old kind named Mike, a warm, funny, optimistic genius trapped in a body challenged by Cerebral Palsy. I was in for the biggest lesson of my life!

4 years later, I was running across America trying to raise awareness of the difficulties faced by some of America’s most valuable citizens. This is the story of 2 friends, one wheelchair, and a dream that became a mission….








To get your copy send a check or money order to
Keep On Keeping On Foundation
7061 W. Touhy Suite 601
Niles, IL 60714

People always ask me what the hardest part about living with Cerebral Palsy and being in a wheelchair. They are always slightly surprised when I answer. People tend to assume and rightly so, that it would be the big stuff, like not being able to walk, not being able to use the toilet, and have to rely on everyone to do everything for you. Sometimes, that is true. It is difficult, but it is something I never had the ability to do, so I don’t know what it would be like to walk. I have no experience, so I do not know what I am missing. Therefore, the hardest part is the little stuff. The stuff that everyone else can do, but I can’t because of a little tweak in the system. The tweak could be the fact that I can’t look in the fridge to see what we have to eat. Certainly, I could ask someone, but it would be nice to look on my own. Another tweak is when I can’t go see a movie. For example, this week I wanted to see Shutter Island - but because of “MY” Cerebral Palsy I have reaction to being surprised. So, if something scares me, makes me jump, or catches me off guard, I can seriously hurt my back. Since, my back was already hurting, I didn’t want to take the chance with this movie. It is this uncertainity that makes me angry and what would seem to be the simplest thing for the average person, is the most difficult to me.
With adversity comes triumph. You can’t have the good without having the bad. Overcoming a struggle can dissipate the actual struggle. Success in the face of insourmountable odds is what keeps me going and that is what the Keep On Keeping On Foundation is all about! Taking a situation and making the best of it!
Please join us on Thursday, March 4th for our March Forth Celebration of Perseverance. This will be our First Annual Awards Ceremony and Dinner. Click on the link for tickets!
http://www.keeponkeepingon.org/events.html
I’m With KOKO are you???
Mike Berkson

by STEVE STOLER / WFAA-TV

Posted on February 9, 2010 at 9:24 PM

FRISCO — Zach Wester, a 15-year-old high school freshman from Frisco, is learning to walk again -- with the help of a Texas superstar.

Zach has cerebral palsy. He endured three surgeries to correct scoliosis. He set a goal for himself to walk 50 feet without resting. The Wakeland High School freshman underwent his first surgery when he was a third-grader. Since then, he's had two other surgical procedures.
After the last one, he could only crawl on his hands and knees. Zach’s father, James Wester, said his initial progress was very limited. “So for him to finally be able to heal up enough to be able to get moving and walking that far — it's been a long road," Wester said.

The sounds from the school's loudspeakers blared: “This is Colt McCoy, University of Texas quarterback.” As Zach's friends, family and aides converged on the school auditorium for his attempt at his goal, a recorded message was played from McCoy. Zach's face lit up with joy.
“To get a message like that, it made such a big difference to him, and his reaction was priceless," said Marisa Wester, Zach’s mother. After getting a boost from the Longhorns' quarterback, Zach started his 50-foot journey. Slowly he inched across the floor. As he got closer to his goal, the cheers got louder.

Zach made it. “I did a really good job," he said. And as he sat back down in his wheelchair, Zach gave one last gesture to his adoring fans and favorite quarterback: A "Hook ‘em Horns" sign.
E-mail sstoler@wfaa.com

By: Mike Berkson

An interesting situation occurred this weekend. It was one of those things that you had to laugh at, instead of putting your fist through a wall. I went to the Cubby Bear (Chicago) for a birthday party. The party was on the second floor. So, obviously I had to take the elevator. (Side Bar: The reason this location was chosen was because it was accessible.) The elevator was not a traditional elevator, it was a lift that was converted into an elevator. It was only for people in wheelchairs, not for anyone or anything else. On the way up the ride was fine, a little bit cramped and a little slow, but fine. The party was great, I got to talk with friends and discuss possible venues for Handicap This, all in all a pretty good party. When we were ready to leave, we got in the elevator and one of the staff members pressed the button and turned the key. We were there for a good 30 seconds before we realized that something was wrong. We just thought it was really, really slow. They tried pressing it a few more times, the consensus was that it was frozen. My next thought was the stairs. Unfortunately, the 20 stairs were too narrow and too steep. We did consider having a group of people carrying me down the stairs. What makes this even more difficult is the fact that about 4 years ago, I had back surgery to straightened my spine. In the process they fused 2 titanium rods to my back each one about 18 inches long. This made the situation even more complicated. My safety would have been compromised. Our next option was to call the Fire Department. The staff at the Cubby Bear was more than accommodating. They called people on their day off including the manager, just to help us and they were happy to do it. When the Cubby Bear called the Fire Department and explained the problem, the Fire Department told them that since it was not an “emergency” there was nothing that they could do. The only way that they could come was if I needed to go to the hospital. Needless to say, the whole scenario was beyond comprehension. Luckily, after an hour and a half, the good people at Cubby Bear were able to fix the elevator. Living with Cerebral Palsy, I have had my share of experiences like this, we are no strangers to overcoming adversity. But what would have happened if the elevator did not work?

Overcoming Cerebral Palsy

By Justine van der Leun
Gregg Mozgala, a 31-year-old actor, used to feel inhibited by his cerebral palsy, a neurological condition that occurs when a child’s brain is damaged before the age of two and afflicts a million Americans — most often in the form of poor coordination, weak muscles, and compromised posture. But with a load of determination and the help of an unconventional choreographer, Mozgala is now set to star in an hour-long dance piece in New York City. “I have felt things that I felt were completely closed off to me for the last 30 years,” Mozgala told The New York Times. “The amount of sensation that comes through the work has been totally unexpected and is really
quite wonderful.” While there is no cure for cerebral palsy, Mozgala’s success suggests that a change in approach to the condition can translate into a change in the lives and capabilities of sufferers. Mozgala’s journey began in 2008 when he met choreographer Tamar Rogoff After seeing Mozgala play the lead in “Romeo and Juliet,” produced by Theater Breaking Through Barriers, a group composed of disabled and nondisabled actors, Rogoff was inspired to create a dance piece for him. At first, both Mozgala and Rogoff imagined a 10-minute performance: Mozgala, who then walked on his toes with his upper body thrown back, assumed he could not
manage much more, and Rogoff figured she would create some basic choreography for him. But as they began to work together, her imagination and his capacities began to expand.

Rogoff, who knew little about cerebral palsy, taught Mozgala techniques to release muscular tension. She helped him locate areas of his body over which he had previously exercised no control. In agonizing and illuminating sessions, they worked together to increase his range of movement, employing dance and stretching techniques, and finding his true physical limits. Soon enough, Mozgala was able to stand up straight, to place both feet on the floor, as well as to feel
his Achilles tendon, which he had never before done. He called these revelations
“eureka moments” in the New York Times interview. “There are pre-existing structures in the brain that are very receptive to music, rhythm, and moving to music, which is why at a rock concert, everyone is swaying,” explained Mindy L. Aisen, MD, medical director of The Cerebral Palsy International Research Foundation. “The innate pleasure we get from music acted as a reinforcement for getting [Mozgala’s] body re-engaged and for forging new pathways in his brain.”Mozgala had been to physical therapists for over a decade, but his dance training
was different: While before, the therapists had moved his body for him, now he learned how to move his own body. Rogoff identified some of the physical patterns he had been stuck in and gave him specific instructions on how to overcome them, both in the studio and out. His daily life has changed: His balance and strength are so improved that he rarely falls; his gait is steadier,
and he is subject to fewer stares on the street. Most important, he no longer feels
mentally constrained by cerebral palsy. As he told the Times: “Everybody told me
there was nothing I could do,” he said. “That’s just what you hear, from the time
you’re five to adulthood. Tamar gave me an option.” According to Aisen, Mozgala’s story supports an open-minded, patientcentered approach to Cerebral Palsy and other neurological impairments. CPIRF is considering funding a dance therapy program, and at their Washington, D.C. Center, they have begun to use robotics and fun, motivational virtual games to help children use afflicted muscles. “Just as musicians have to practice to hone a motor skill, a brain that’s never had a chance to develop in areas needs the opportunity,” says Aisen. “We think we
can help anyone with cerebral palsy reshape their nervous system in a way.
It’s not a cure, but it is going towards a cure.”

By Melinda Sacks


for the Mercury News

Unlike his peers, though, he can't say most of what is on his mind. When he tries, what comes out are moans and grunts, unintelligible to all but close family members and caregivers.

The tall, handsome young man loves gospel music, cell phones, Taco Bell and knit polo shirts that show off his broad shoulders. But the inability to speak is a frustrating fact of life for Hills and his mom, Evelyn Glasper. Having a conversation is a lot of work — still, they both try.

"He'll go and get my purse and it is his way of saying, 'Let's go out!'"Š" says Glasper, a single mother who is on disability for chronic back pain and depression. "People underestimate how much he understands and how much he can communicate. It's just that sometimes I am the only one who can understand him. And it is really frustrating for him."

Born with cerebral palsy, Hills struggles with the most basic tasks. An in-home caregiver must be with him at all times, helping with everything from getting dressed to taking a shower. He can walk, but has problems with balance, so a helping hand often is necessary.

The cozy living room of the family home in East Palo Alto is a virtual photo gallery of Hills and other family members, many of whom live in Evelyn Glasper's home state, Louisiana. Over the mantel is a framed painting of a man stepping off a cliff, into the air above what might be an ocean.

"That image is about blind faith," Evelyn says. "Knowing God is there."

Going to church is one of Hills' favorite outings, she says. He loves to get dressed up and is so fond of it that they go to their own church on Saturdays and with friends to another church on Sundays.

"We've been friends since he was very small," says Jennifer Jackson, Hills' daily caregiver, a neighbor and friend who is often at the house.

Brandon's affection for her is obvious as he gives her a kiss on the cheek and sits by her side as she talks.

"Brandon's 24 and his mom is over 60, so it is important we get a means for him to communicate with other people," Jackson says. "It is every mother's fear that they will leave their children. The more we get Brandon ready to be independent in the world, the more secure his mom would feel. We want to be sure he has the ability to live a good quality of life."

What would make life easier for Hills and his mother is a speech-generating electronic communication device that would allow him to point to scenes and symbols that represent what he wants to say. Donations in increments of $50 will go toward its $3,285 purchase price.

A sturdy tricycle customized for Hills' special needs ($1,369) would help him have more mobility. And gift cards ($25 each) for clothes or music would be much appreciated.

Hills doesn't sit around feeling sorry for himself. He approaches each day with enthusiasm and a grin.

When it is time to leave for his "school" — an adult care center in Menlo Park where he goes weekdays — he's is all smiles, grabbing his navy backpack and heading to the car.

By Michelle Diament
November 25, 2009
For three decades Gregg Mozgala struggled to walk with cerebral palsy forcing his body up on its toes and wavering from side to side. But at 31, that’s all changing thanks to a choreographer.

Mozgala, an actor, has been working with Tamar Rogoff for just eight months, but is slowly gaining use of muscles and tendons that had been off-limits all his life. In intensive sessions, the two work on one area of the body at a time focusing on tension-release. Unlike physical therapists he’d seen in the past, Mozgala says Rogoff has given him the key to access his own body.

The result is that Mozgala can now walk more smoothly and doesn’t fall like he used to. And it proves what scientists have come to believe about the brain — that it’s constantly changing and able to grow.

The pair’s success is also yielding a four-person hour-long dance premiering in December in New York City, much more than the 10-minute presentation the two envisioned at first, reports The New York Times.

Published online on Monday, Nov. 16, 2009
By Ron Orozco / The Fresno Bee
About the series

The wish: Criselda Ruiz wishes for an EasyStand Magician chair. Cost: $2,236

How to help: For the 17th year, The Fresno Bee, in partnership with the United Ways of Fresno, Tulare and Madera counties, is publishing Wrap Up a Wish, a series of stories about families, individuals and organizations with special needs -- and inviting readers to help with cash contributions. It's The Bee's hope that you, after reading these stories, will help make your neighbors' wishes come true. Just use a coupon that will appear inside The Bee through Dec. 10 to designate the recipient of your donation. On Christmas Eve, we'll follow up with a report on your response to Wrap Up a Wish.

Criselda Ruiz is the mother of seven children, including two sets of twins. She says she loves all her children the same but devotes quite a bit of attention to Janessa, 7. Janessa has cerebral palsy. All the other children, ages 2 to 13, are healthy, including Janessa's twin, Jonathan.

At 6 months old, Janessa began hemorrhaging. Doctors diagnosed her with cerebral palsy, a disorder resulting from damage to the brain that can affect coordination and muscle movement.

She wears leg braces and can't walk. She speaks just a handful of words, including "agua."

"I still love her either way," Ruiz says, tears welling in her eyes. "She's my special kid." The doctors told Ruiz that Janessa needed to sit up on her own by age 5. Otherwise, it may be harder for her to eventually walk on her own.

Sitting up hasn't happened yet -- and that concerns Ruiz.

Doctors believe an EasyStand Magician, a system that helps support a child in sitting and standing positions and can be easily moved, could help the girl. The device costs more that $2,000.

Ruiz's income is limited to $486 she receives monthly from Fresno County to care for Janessa. She lives in government-subsidized housing and receives food stamps.

"It's hard every month," says Ruiz, who has been separated from her husband for six months. "After all the bills are paid, there's a little left."

Janessa previously attended Storey Elementary School, which offered therapy programs suited for her. For a while, she needed the help of oxygen tanks. She now is in the second grade at Lane Elementary School.

Ruiz says Janessa is constant with her smile. "She is always happy," Ruiz says, adding that she is hopeful that Janessa will be able to walk.

"I pray for her all the time."

The reporter can be reached at rorozco@fresnobee.com or (559) 441-6304.

Your world is turned on its head and suddenly even the everyday tasks that we all take for granted become so much harder.

She and husband, Bernard, are full-time carers for their grandson, Kyle.

The 12-year-old has cerebral palsy, epilepsy, asthma, global development delay and learning difficulties.
“Caring for a disabled child you tend not to go out and about as much,” says Mary, 61.

She considers the family lucky as Kyle is mobile, but she says: “People whose children are severely disabled can find it difficult to even go on the bus - simple things that we take for granted.”

That is why the Middlesbrough couple decided to join Parents 4 Change, a network that brings together parents, carers and service users to share their experiences and work alongside the professionals to find solutions to everyday challenges.

“We have learned an awful lot about different disabilities and how people cope,” says Mary. “It makes you feel as though you are not alone and it puts your own child’s disabilities into perspective.”

Chloe Levine was born seemingly perfect — she was the happy and healthy baby her parents had dreamed of.

But by the time she was 9 months old, Chloe was not reaching the milestones her older sister Shayla had met at that age.



Cord Blood Reverses Cerebral Palsy in Colorado Girl - Incredible Health - FOXNews.com

Paris - Diagnosed with severe cerebral palsy, 32-year-old Anne Lamic spends her days in south-eastern France mostly in bed, surrounded by stuffed animals and dolls. She cannot speak or walk, and she sometimes has seizures.


Disabled daughter, live on web: News24: SciTech: News

Growing non-profit devoted to helping families of children with cerebral palsy and brain injury commits to mission of informing and supporting parents

PHILADELPHIA—Danielle’s Foundation, a growing non-profit organization dedicated to helping parents of children with cerebral palsy and brain injury, announces the publication of its new book, Getting the Therapy, Benefits, and Resources Your Child Needs: A Guide for Parents of Children with Cerebral Palsy and Brain Injury.

Authored by Richard P. Console Jr., one of the volunteers at Danielle’s Foundation, the book was written to help parents navigate the complexities and challenges associated with successfully raising children with brain injury and cerebral palsy.

The comprehensive, 176-page guide includes the following topics:

• Understanding your child’s diagnosis, and what it means for the future
• Funding your child’s care
• Securing effective and cutting-edge therapies
• Negotiating successfully with your insurance company
• Demystifying the often confusing world of government benefits
• Ensuring your child receives the education he or she deserves
• Estate planning for families of special needs children

“My reasons for writing this book are personal,” said Console, who helped found Danielle’s Foundation in memory of Danielle Vick, the daughter of a friend who passed away in 2008 from complications associated with anoxic brain damage at just 4 years old. “While Danielle’s life was short, it was incredibly inspirational, and though she is no longer with us, we take comfort in knowing that we can make her legacy live on forever”.

Console said the purpose of the book is to educate and empower families of children with brain injury and cerebral palsy, so they can effectively advocate for their children. While he admits that families of special needs children face difficult challenges, he feels that with knowledge and education comes hope. “Every parent wants the best for their child, but getting the benefits their child needs is not always easy, and a lot of parents don’t know where to turn for help and support. We want Danielle’s Foundation to be that guiding light to which families can turn.”

“Getting the Therapy, Benefits, and Resources Your Child Needs: A Guide for Parents of Children with Cerebral Palsy and Brain Injury” is FREE to parents who call Danielle’s Foundation today toll free at 1-800-208-3494.

Parents interested in learning more about Danielle’s Foundation, and the support and services it offers, may visit www.DaniellesFoundation.org for more information.


About Danielle’s Foundation

Danielle’s Foundation is a non-profit resource that is committed to helping families of children with cerebral palsy and brain injury gain the knowledge to secure the therapy, benefits, and resources their children need. It was created by a team of grassroots volunteers whose mission is to help parents navigate through the challenges and complexities that arise while caring for their children. Their website, www.daniellesfoundation.org, also offers hundreds of articles related to treatments and therapies, education, estate planning, and legal and financial issues. Join Danielle’s Foundation today to become a part of their support network, where parents can unite to share and exchange their knowledge to educate and empower each other via their online forum.

Contacts

Danielle’s Foundation
Kristin Testa
1-800-208-3494
press@daniellesfoundation.org

hi my name is DAWN i am 44 yrs old and have a disabillity called cerebral palsey hemipligia which effects my rt side i try not 2 let it get the better of me altho some times it does get me down i live my life as full as it allows i have 4 ablebodied children aged 21 19 18 17 and 3 beautiful grandsons also able bodied im also divorced my choice lol and live very happily without x lol my disabillity doesnt stop me being a nice person and being funny and careing and very strong minded helps deal with the down falls of what i was born with so i hope by telling who ever reads this a little about me helps them if they have a disabillity 2 deal with that its not that bad and u can live your lives 2 the best of your personal abillities take care enjoy your day if you would like 2 msg me then feel free hope 2 hear from u soon bye 4 now

By Denise Richardson

Staff Writer

ONEONTA _ Kieran Jennings and his classmates at Valleyview Elementary School took a math test Thursday.

The pupils picked up pencils. The room grew quiet with concentration.

Kieran, 8, carefully wrote answers on a sheet from a workbook, as his peers at nearby desks recorded and checked figures and sums.

The quiz time was a short spell in a morning busy with reading, writing and listening activities in the second-grade classroom.

Kieran, who has cerebral palsy and uses crutches to walk, kept pace with the schedule. He readily moved around desks, chairs and tables, and from one academic assignment to another.

"He puts forth a lot of effort," Judi Visnosky, his teacher, said. Kieran is among 12 students in her class. At the beginning of the school year, Visnosky said, she moved a table to make room for Kieran's wheelchair, but otherwise there has been little need for other accommodations.

He is treated just "like everyone else," Visnosky said. Kieran is part of the group, she said.

He sits on the floor with classmates during reading time, participates in question-and-answer sessions and plays in gym class.

Coping with the challenges of cerebral palsy seem an accepted part of daily challenges for Kieran, who said his favorite class is gym.

His physician, Dr. Joseph Dutkowsky, said he hopes the sight of crutches and wheelchairs used by children with CP will "melt away," and that people will grow to know Kieran and others as individuals with goals, desires and other human attributes.

Keirstan and Tom Jennings, Kieran's mother and father, are among parents, physicians, physical therapists and children's advocates who signed up

for the Bassett-Columbia Symposium on Cerebral Palsy, held at The Otesaga Resort Hotel in Cooperstown on Friday. The program, organized by Dutkowsky, was designed to provide updates on available treatments and venues to discuss the effects cerebral palsy has on individuals and their families.

Cerebral palsy is a group of disorders that have an impact on a person's ability to move and maintain balance and posture. The condition is caused by an injury to parts of the brain, or as a result of a problem with development, the CDC said. Often the problem happens before or soon after birth.

Dutkowsky, a pediatric orthopedic surgeon at Bassett Healthcare, said the condition is an injury to transmitters, or the motor part, of the brain. CP must never be confused with mental retardation, he said, and most people with CP have normal intelligence.

According to the CDC, one in 278 births in the United States results in a child with CP.

More infants with low birth-weights are being saved through skills of medical staff, Dutkowsky said, and the result is a growing number of individuals with CP in schools, work places and communities. Research also is advancing treatment for CP, which gives hope to families and patients, said Dutkowsky, an associate clinical professor of orthopedic surgery at Columbia University. His seminar topic at the symposium focused on how children with CP make a transition into adulthood.

Bassett Healthcare and NewYork Presbyterian, the hospitals of Columbia and Cornell universities, were symposium sponsors.

Early diagnosis, early intervention

Kieran was born prematurely and spent two months in the neo-natal intensive care unit at Albany Medical Center, his parents said, and he battled fungal meningitis.

Physicians were "very careful to not say" Kieran had cerebral palsy, Keirstan said, but a physical therapist confirmed the condition when Kieran was 6 months old. Tom said he remembers the milestone when a pediatric developmental neurologist said his son wasn't mentally disabled; Kieran was 10 months old, he said.

Keirstan said the fact that she and Tom were teachers in the Oneonta School District helped them feel confident about the support and instruction their son would receive.

She teaches art, and Tom is in his second year as a principal at Schenevus Central School, after having taught social studies at Oneonta High School. Before Kieran started school, each parent took two years off work to be home with Kieran and give him the hours of daily physical therapy he needed.

The Jennings said they remembered when Kieran asked about how long he would have cerebral palsy.

Kieran one day asked, "When I'm in second grade, will I have CP?" Yes, his father replied. Third grade? Fourth? Yes. Yes.

Keirstan said she was holding back tears. Tom told Kieran, "You'll have it all your life."

After a thoughtful moment, Kieran asked if they could go to Ruffino's Pizzeria for dinner.

Kieran attended pre-kindergarten at Greater Plains Elementary School and kindergarten and first grade at Valleyview. His parents said his teachers and the school staff worked hard to make Kieran's academic and social experiences successful.

More second-grade lessons

Teaching assistant Marilyn Bailey is an integral part of Kieran's community. She said she meets Kieran as he gets off a school bus in the morning, is nearby most of the day to help with academic and physical tasks and sees him to the bus after school. When he needs help, she is there. She is a partner in relay races, she said, and they sing in the elevator when no one else can hear them.

"He's just a delightful child," Bailey said. "He has a sense of humor. ... He's very agreeable,"

In the classroom, Kieran has a chair with wheels on the back legs. When at his desk, he uses a seat belt to prevent falls. He will walk, using crutches, to move about the classroom, and a wheelchair always is nearby for use in case of an emergency.

Kieran has trouble with zippers, she said, and he is rather easily distracted. Sometimes wanting to help him is a natural inclination, she said, but the greater goal is teach him to do things for himself and develop skills to further the independence he already is showing,

"He's very independent, but he's still learning," Bailey said. "I'm just there `in case.' ... I'm still learning to work with him."

Hard work leads to success

Tom Jennings said, with a smile, he wants Kieran to become an "alpha male." Jennings said he hopes his son becomes ambitious, self-sufficient and is happy. His son must continue physical activities throughout life, he said, and he is wondering about weight-training and future sports participation. His mother said she hopes Kieran will go to college and "finds a job he loves."

Kieran already has gained self-confidence that grows from facing and succeeding at challenges every day, Tom Jennings said.

"Hard work trumps talent _ every time," he said. "He's learned that if he doesn't quit, he'll succeed."

That earned success is an important lesson that some adults haven't learned, the Jennings said. They also attribute Kieran's success to the work of physical therapists who refused to let him quit.

Liam Jennings, 9, a fourth-grader at Valleyview, said his favorite activity with Kieran is to "run around and wrestle."

"Kieran is the best brother," Liam said.

Tom Jennings said Kieran is a hard-worker, empathetic, kind and inclined to play well with other children.

Skyler Payne is a classmate who enjoys spending time with Kieran, the teachers said.

Skyler, 6, said he and Kieran like to play with Matchbox cars and color.

"We also love Monster Jam and Transformers," Skyler said. They play catch, and Skyler said when they play tag, "I walk slow." Kieran is a "100 percent" friend, compared to others who are "99 percent," he said.

"He really is a good friend to me," Skyler said. "And I am really a good friend to him."

To the Editor:
Cumberland Times-News

I am writing, hoping you will help raise awareness about Rett Syndrome. It’s the leading cause of severe impairment in girls, yet the general public still doesn’t know about it. A baby girl is born every five hours with this debilitating disease.

Imagine: symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorders ... all in one little girl.

Our family does not have to imagine this, we are living it. My 21-year-old daughter Amanda was diagnosed with Rett Syndrome in February 1991.

Rett Syndrome is the most physically disabling disorder of the autism-spectrum disorders.

However, it’s the only autism-spectrum disorder with a known genetic cause. Primarily affecting girls, Rett Syndrome often strikes just after they have learned to walk, speak few words, and begins to drag their development backward.

This debilitating syndrome includes symptoms seen in many other severe neurological and neuropsychiatric disorders on which Rett research may shed light.

These include many of the following: regression, loss of speech, motor control and functional hand use; orthopedic problems including scoliosis and osteopenia; impaired cardiac, circulatory and digestive functions; autonomic instability and sleep disturbances; many varieties of seizures, often untreatable; autistic behaviors and sensory issues; Parkinsonian tremors; dystonia; anxiety and apraxia.

Currently, there are no effective treatments for Rett Syndrome. Most girls survive into adulthood and require total, 24-hour care. As of now there is no cure.

But, by raising awareness and continuing to fund research projects, we may be able to make a difference in the lives of girls with Rett Syndrome, and their families.

In 2007 the journal Science published the work of Adrian Bird, Ph.D., demonstrating the reversal of Rett Syndrome in mature mouse models with late-stage disease.

Days away from death, these animals recovered normal function and became indistinguishable from healthy mice in a matter of weeks.

This singular achievement has catapulted Rett into new realms of possibility and positions Rett Syndrome to be the first curable childhood neurological disorder. Rett Syndrome, unlike so many disorders (autism, Alzheimer’s, Parkinson, MS, etc.) has unique advantages: a known cause (a gene, known as MECP2), excellent animal models that faithfully mimic the human disorder, the prospect of reversibility and fast-paced research progress in the last few years.

There are clear treatment approaches that are currently being explored. The ideas, people and projects are in place. Funding is needed to execute this critical work.

As printed in a www.eurekalert.org/

pub_releases/2009-09/irsf-iaf092109.php public release announcement:

On Sept. 21, 2009, the International Rett Syndrome Foundation announced that it will provide $200,000 in 2009 to support a newly proposed clinical trial with a growth-factor based treatment for Rett Syndrome.

The study will be carried out by a team of clinical trials specialists at the Boston Children’s Hospital, led by Dr. Omar Khwaja MD, PhD and will be the first potentially disease modifying therapy ever to be tested in Rett Syndrome patients. Investigators will test a drug called Increlex.

“We are pleased to announce the funding of this groundbreaking new clinical study which presents a novel therapeutic strategy for the treatment of Rett Syndrome” said Dr. Antony Horton chief scientific officer at the International Rett Syndrome Foundation.

“This study will be carried out by a collaborative network of leading clinicians and neuroscientists in some of the World’s most prestigious research institutes at the cutting edge of biomedical research. Through our funding of this study we demonstrate our commitment to moving forward the most advanced treatments to prevent, treat and ultimately reverse Rett syndrome,” he said.

Ronna Reid

Rawlings

By Nancy Badertscher


The Atlanta Journal-Constitution

1:34 p.m. Saturday, October 10, 2009

Cody Holloway travels the halls of his Sandy Springs high school in a motorized wheelchair.

“The real deal on wheels,” says the sign on the back.

That combination — chair and slogan, disability and attitude — tells you something important about Cody, 14. Children with cerebral palsy may or may not think about the future in a different way from children without it. But in Cody’s case, they run for class president.

“Believe it or not, it actually started out as a joke,” Cody said recently.

Maybe so, but the idea took hold. It was last year in Jennifer Macke’s eighth-grade science class at Ridgeview Charter School that students sat pondering major milestones that might be reached by the time they celebrate their 100th birthdays.

Each student’s timeline was discussed, and when they got to President of the United States Cody Holloway, all of the class “loved it,” Macke said.

And last month he was elected ninth-grade class president at Fulton County’s Riverwood International Charter School.

“If Cody had said he was going to rule the world, I would have said: ‘That sounds about right,’ ” Macke said. “He’s certainly not one to let his disabilities hold him back in any way, shape or form.”

Cody navigates the halls in his wheelchair. A full-time aide at school helps him maneuver through crowded class changes, scribe his answers on standardized tests and interpret his labored speech, especially first meetings.

As candidate for class president, Cody billed himself “the real deal on wheels” and vowed to be “a voice” for students with teachers and faculty.

But he had more than a catchy slogan. His classroom aide, Brady Radford, was his strategist and helped take the campaign to Facebook. His dad had the title of campaign manager but insists he was strictly on the sidelines.

“He did his own thing, and I got out of the way,” Jeff Holloway said.

Two teachers pitched in so his televised message to voters was closed-captioned, bringing clarity to some of Cody’s pronunciations.

Whizzing around in his chair with “the real deal” slogan on the back, Cody solicited votes up-close from classmates, many of whom he knew in middle school.

“He decided since he drives this baby everywhere, why not use it as rolling advertising,” Radford said with a hand on Cody’s wheelchair.

Cody keeps up — especially with news and sports. As a candidate, he promised to keep his classmates abreast of the latest at school and in the community.

Students, like friend and fellow ninth-grader William Cormier, rallied behind him.

“He’s really friendly with everybody,” William said. “He also was very determined.”

Hannahkohl Almire said she watched Cody’s televised campaign speech and was impressed. She also liked his “real deal” slogan. “It was really cute,” she said.

Elections for class president were held in early September. Cody was declared the winner for the ninth grade, though the actual vote counts are never revealed.

“The biggest part was for students to realize that Cody’s cerebral palsy didn’t affect his mental abilities, only his communication and mobility,” said Joel Kadish, a Riverwood teacher and the faculty sponsor for student government.

The win was no surprise to Cody’s mom, dad, brother and sister. “We expect him to do good,” his dad said. “[He] quickly becomes Mr. Popular” wherever he goes.

Cody, who blogs on his beloved Detroit Red Wings and the Crimson Tide, ponders new places he might go — new what-ifs along his timeline. There’s nothing serious in it about himself as U.S. president, but Cody said he would like see one more “open to the needs of the disabled.”

Cody wants to be a sportswriter.

“He told me that all he wants is for everyone to see that just because someone has a disability doesn’t mean that they are not capable of being successful. They just have to work a little harder sometimes,” Cody’s dad said.

Adam McGahagin interviews Brandon Ryan — Writer, Author, Living with Cerebral Palsy


Enoch Magazine) Brandon, you have been diagnosed with Cerebral Palsy, what does your typical day look like?

Brandon Ryan: Well, some days I open my eyes, look out the window and then slam my head back down into my pillows. Some days I just want to sleep. But then I realize that I have to get up, I have to make something of the day I’ve been given. Some days are easier than others. Some days, I feel like I’m on cloud nine, and other days I just feel so worn out. I spend a lot of time promoting and marketing my first book. I try and remember that there are people in this world that believe in me. But some days I get down and think “What’s the point of all this?” I day dream a lot, I think every writer spends a huge chunk of time, day dreaming, studying and reflecting. But really, I’m just like anybody else, I get up and I work from nine to five, sometimes later.




Living With God AND Cerebral Palsy — Brandon Ryan Interview / www.enochmagazine.com |

How many times have you honestly and earnestly shared your hopes and dreams with not only the people closest to you, but friends, collogues and those who claimed they could help; only to hear words that hamper you and held you back. How many times were you stifled? And, how many times were you and your abilities to move forward held back. Did you feel trapped, frustrated, and beside yourself? Did you wonder when your chance was going to pan out? But instead, you were no further along on the pathway to the life you wanted to lead.

Well, my dear friends, I am writing this article because I have spent a lifetime not listening to those “Pearls of Wisdom.”

Again and again in every aspect of my life, I have turn the other check and found a way to accomplish what every expert and even my beloved family thought was impossible. But I “dreamed the impossible dream, and fought the unbeatable foe.” There are many times in my own personal life when I can remember reaching out to my mother, asking for help to get an education at a time when disabled people, with learning disabilities were not getting degree’s at all, and hearing my mother say… “Why don’t you just accept yourself the way you are instead of forcing and fighting your learning disability to make the impossible happen. Upset, and even more determined, I kept walking through the storm. I kept forging forward even though I was told what I was told. I smiled, grinned and beard it, but was not going to let my mother’s words and her beliefs about me affect me or hamper my quest.
While I knew my mother was being very loving toward me, I also knew that I would not have a place in society, and at the table if I did not push forward and make every attempt and effort to make my life happen.

When I finally got my degree no one was happier than my mother and me. She was the only one who knew what I went threw day in and day out. She came up to me, wrapped her loving arms around me, and hugged and kissed me in the fashion I knew so well. Then, all of a sudden, I found her whispering in my ear… I’m sorry Kranalala” You don’t know, or maybe you do know what this meant to me. It made me radiate with happiness. It made me radiate from within out. And, it made me radiate with sheer joy and bliss because I had reached one of my first unreachable dreams. It was not just hearing my mother’s words of acceptance and love, but knowing that I listened to myself, my heart, and my drummer, and followed a long and arduous pursuit of mine, of which I had just accomplished.

On that day of mine, I learned one very important lesson. That lesson was to always follow your own heart and to stay true to your own dreams and what you know about yourself. People can say what ever they want. But, if you know the truth within yourself that’s what matters! No matter what is said, there are always ways one can still make things happen. You can set yourself free and you can set yourself apart from everything other people say and think about you. You can hold your head high, reaffirm the truth of your own self and own abilities, and walk past and through all obstacles. It is all up to you. It is in your own attitude and belief. Know one can take that away from you if you truly believe in yourself. It may not be the next day, week, month, or year that you get whatever you desire. But it will happen if you stay the course.

You don’t have to be mean, nasty, or get in people’s faces for giving there own opinion, but you can rise above, be eloquent and poised, and accomplish your goals with dignity in a timely, peaceful manor.

www.fdlreporter.com
By Stacy Ellingen
Special to The Reporter

Is the economy ever going to get better?

Where are the jobs?

Will I ever get a job?

These are the questions going through the minds of recent college graduates.

I ask myself these same questions daily, except I have some extra concerns to worry about.

Because of oxygen loss at birth, I was diagnosed, at age 3 months, with Athetoid Cerebral Palsy .

CP affects every part of my body. My muscle tone fluctuates, which makes simple tasks seem impossible. Except for when I'm sleeping, my body is always moving. I need help with all of my basic needs (dressing, toileting, feeding, etc.) I use a power wheelchair to get around and a communication device to speak with others.

Despite having a disability, I've been able to accomplish far more than many people expected. After a couple of years of early childhood classes, from kindergarten on, I attended regular classes. A one-on-one assistant was assigned to help me in the classroom. I did almost all of my schoolwork on the computer and had accommodations as needed. Even though assignments took me much longer to do, I never took any assignment modifications. I graduated from Fond du Lac High School in June of 2003.

Moving on to college

Graduating from high school was a big accomplishment, certainly, but I knew I wanted to go on. In the fall of 2003, I started at the University of Wisconsin-Whitewater. Before deciding on UW-Whitewater, my parents and I did a lot of research. We had to look at different things other than what a "normal" prospective college student would. Things such as accessibility, academic support services and personal care services were critical when I was looking at colleges.

UW-Whitewater is nationally known for specializing in serving students with physical disabilities. There's a center called the Center for Students with Disabilities where all of services for students with disabilities are located. Services include note taking, testing services, alternative media, transportation, physical therapy, and many others. There are also in-class aides for classes that have labs.

I started out majoring in business, but after struggling through a couple econ classes and an accounting class, I switched my major to advertising with a multimedia minor. Because assignments took me longer to complete, for the first few years, I was unable to take the full number of credits. Therefore, it took me a little longer, but I graduated in May. I can't even begin to express how thankful I am that I went on to college. It helped me become so much more independent and self-confident.

After graduation, I moved back home to Fond du Lac. Currently, I'm looking for a job and working on getting an apartment set up. I'm working very part-time as an online mentor for high school students with disabilities.

Dream career

My dream career is to design publications for a company. I'm working with the Division of Vocal Rehabilitation and disability employment agency to help me get a job. With the job market as tight as it is today, it will be a challenge for me to land a job. I will have to prove that, despite my disability, I will be beneficial to the employer. This isn't an easy task.

To be fair to the employer, I'll have to explain my situation and the accommodations I will need. I'm well aware that revealing this will automatically put me at a large disadvantage, but it's something that needs to be known.

In my classes, I've learned that because of tight deadlines, some companies work in a very fast-paced environment. That will be something that I will have to discuss with the employer.

Because of my physical limitations, things take me much longer to complete. People who know me know that I'm a very hard worker, and I won't stop working until the project is done. I'll have to prove that I'm dedicated to the job.

I have a portfolio that I can show which not only includes articles I've written for the paper, but also projects I've done. This will provide the employer with a sample of my capabilities.

Eventually, I'd like to work in an office setting, but I'm aware that when I first get a job, I'll most likely be working from home. If and when I work in an office, DVR will work with the employer to provide the accommodations I'll need. I'll need accommodations such as accessible doors, an accessible restroom, an adapted computer desk and an adapted keyboard.

Hiring people with disabilities adds diversity in the workplace, which builds companies' reputations. It shows that the company is willing to work with people with disabilities. It may take awhile, but I'm confident that I will find something right for me. I'll put it this way — I won't give up until I do.

Additional Facts
Disability series
Today’s personal stories by Stacy and Deb Elligen are part of a 4-part series by The Reporter that focuses on people with disabilities.

Monday’s feature talks with employers and services that help the disabled find employment and highlights the U.S. Census Bureau latest disability figures in Fond du Lac County.Tuesday we talk with Alto resident Don Saffron, who has started his own business.

October is observed as Disability Awareness Month to help empower Americans with disabilities through awareness.

RULES FOR COMMUNICATING WITH PEOPLE WITH DISABILITIES

1) Speak directly rather than through a companion or sign language interpreter who may be present.
2) Offer to shake hands when introduced. People with limited hand use or an artificial limb can usually shake hands.
3) Always identify yourself and others who may be with you when meeting someone with a visual disability.
4) If you offer assistance, wait until the offer is accepted.
5) Treat adults as adults. Never patronize people in wheelchairs by patting them on the head or shoulder.
6) Do not lean against or hang on someone’s wheelchair.
7) Listen attentively when talking with people who have difficulty speaking and wait for them to finish.
8) Place yourself at eye level when speaking to someone in a wheelchair or on crutches.
9) Tap a person who has a hearing disability on the shoulder or wave your hand to get his or her attention.
10) Relax. Don’t be embarrassed if you happen to use a common expression, such as “See you later” or “Did you hear about this?” that seems to relate to a person’s disability.
More information is available from American Association of People with Disabilities at www.aapd-dc.org

Words by Geoff Abbott and Pictures by Steve Ford




Nik Royale climbing mountains close to his home near Llanberis


A rock climbing enthusiast is hoping to become one of the first disabled instructors in the UK.

Nik Royale is in the final stages of a training process which will allow him to instruct at indoor climbing centres.

The 36-year-old, who lives near Llanberis, Gwynedd, has a progressive form of cerebral palsy and needs to use a wheelchair at times.

If successful, he hopes to set up disabled rock climbing clubs "to break down the barriers".

Mr Royale said: "I need the wheelchair because I can't walk all the time and after I've been climbing my legs go all shaky because it puts a lot of pressure on them.


There is a lot of misconception about the sport that it's only suitable for the very fit and very strong... it's open to absolutely everybody and Nik is very passionate about the sport and wants to publicise that fact

Jude Hargreaves, Awesome Walls, on Nik Royale, pictured
"If I pass my assessment I would like to help set up disabled rock climbing clubs because it can help with balance, coordination, physical fitness, stamina and confidence.

"I would like to break down the barriers so people in wheelchairs can actually do it," he said.

He has recently started training at a centre in Liverpool as part of a requirement to climb at three different centres, and said the more challenging facilities had helped him develop.

"Awesome Walls is huge and they're constantly changing their routes," he explained.

"It's very wheelchair-accessible and the staff are friendly and they've made me feel very welcome.

Technical skills

"They've let me train there for free and that includes two friends who can climb with me.

"I've increased my technical skills and I'm climbing a grade higher now."

He is helping at the centre as an assistant instructor and has been a hit with the younger climbers.

The centre's assistant manager, Jude Hargreaves, said people could forget his disability because he was already a "very good climbing instructor".

"He knows his stuff which is essential and we're really pleased to have him on board," said Jude, who has worked at the centre for two years.

"The way it works at the climbing wall is that we like it to be open to absolutely everybody.

"There is a lot of misconception about the sport that it's only suitable for the very fit and very strong.

"That's not the case. It's open to absolutely everybody and Nik is very passionate about the sport and wants to publicise that fact."

BACKGROUND: Cerebral palsy is a condition that causes physical disability in early development. It is caused by damage to the white matter in the motor centers of the developing brain and abnormalities that disrupt the brain's abilities. Brain damage is caused by bleeding and a lack of oxygen to the brain. Perception, cognition, communication and musculoskeletal problems may also occur. Exposure to toxic substances, premature birth, low birth rate, infections during pregnancy and blood type incompatibility are some of the many risk factors for cerebral palsy. There is no cure for cerebral palsy, but treatments used early and regularly can reduce the affects of the disease. Many specialists are examining how brain cells form and make the right connections and are trying to prevent disruption of the normal development of the brain.

SYMPTOMS: Young children with cerebral palsy may not be able to crawl, walk, or sit without support or reach. Development of abnormal muscle tone or uncontrolled movements may occur. Speech problems, mental retardation, seizures, hearing loss and vision problems are also symptoms of cerebral palsy. Experts say if parents see their child develop these symptoms, they should contact their health care provider for testing.

TREATMENTS: Rehabilitation treatment involves physical activity and stretching to accomplish tasks such as walking and sitting unsupported. Occupational therapy helps address and accomplish needs in order to live the most independent life possible. Communication problems can be overcome by speech therapy. Medications such as dopaminergic drugs like Sinernet and Artane, and muscle relaxants can also be prescribed to reduce abnormal movements and help prevent seizures.

THERAPIES: Lokomat therapy uses a robotic device to help a person learn how to walk. The patient is put in a harness over a treadmill and robotic leg harnesses repeat a natural walking motion while strengthening leg muscles. Computers measure the response to the movements and also provide motivational cartoons to give the patients instruction. Before Lokomat, this therapy was done by people manually moving patients' legs. The more traditional method limited the effectiveness and duration of the therapy, but the Lokomat keeps a constant, more long-term pace. Results from a study indicated that there was an improvement in motor function and walking speed after using Lokomat therapy. Children over age 4 with neurological conditions that are evaluated by a physician are eligible for Lokomat therapy.

The principles behind neuro-cognitive therapy are two-fold. Firstly that children with developmental difficulties experience problems of sensory perception and need the provision of an appropriate ‘neurological environment' in order to correct these sensory mis-perceptions. Secondly, learning can lead development and no matter how badly affected a child is, if information is presented at the correct level and in the correct manner, any child can learn.

The regime is the brainchild of Andrew Brereton, who himself was the father of a child who suffered profound cerebral palsy and autism. Unfortunately Andrew’s son passed away from a stroke four years ago, but during his life and afterward Andrew has striven to study and become qualified in the areas of child development and cognitive psychology.

During his son’s life Andrew gained the his first degree in psychology and child development, later studying in the department of ‘Human communications sciences’ at the University of Sheffield, where he gained post graduate qualifications in ‘Language and Communication Impairments in Children.

’ Latterly Andrew gained his Msc in cognitive psychology and child development.His son’s problems initially motivated Andrew to study as he became tired of the life of his family being controlled by doctors and therapists, who often did not appear to have much of a clue about treating his son. His aim was to amass the knowledge required to free his family from this control, so that they could question the professionals who were treating his son as equals and regain their independence. However, it soon became apparent to Andrew that his studies would become far more meaningful to him than this simple ambition and he began to nurture ideas about helping other children.Andrew’s quest for knowledge led his family all over the world to various clinics who offered alternative treatments, often against the advice of his son’s medical professionals, some of whom treated the family badly, viewing the families decision to try alternatives as a threat to their competence. Despite the fact that some of the alternative treatments were helpful in helping his son make incredible developmental gains, for instance restoring his vision from being cortically blind, Andrew became disillusioned with many of the proponents of such alternatives after discovering their lack of qualifications in the field. It was at this point that he knew how he must use his own studies to help other children like his son.Andrew launched Snowdrop earlier this year and has been staggered at the response from families who have children like his son. Within just a few short weeks of the launch Snowdrop is treating children from as far afield as the US, South Africa and Indonesia, in addition to treating children in the UK.Andrew has also published two books, one on the subject of cerebral palsy and the other concerning autism, which can be obtained through the Snowdrop website.

Baby hospice seeks top spot
ZOE’S Place is determined to clinch the double by being top of the table again at the end of this year’s Wish campaign.

And with only five days to go to register it won’t be long until the tokens start mounting up.

Last year the baby hospice in Normanby collected a staggering 143,830 tokens to take home £1,403.62.

“It was the cutting and sticking I remember, we went through a lot of Pritt Sticks, it was all hands on deck,” said fundraiser Sue Fox, who is ready to do it all again and hopefully raise even more money.

Chief executive Mark Guidery said the 2008 Wish funding was used to buy a standing frame to assist youngsters who struggle to stand while they have physiotherapy.

“It’s a very expensive, specialised piece of equipment,” he said. “Without the money from Wish we would have had to sacrifice something else to buy it.”

Mrs Fox said: “We have 55 families that regularly access Zoe’s Place so we need every penny we can get.

“We know it’s difficult at the moment because of the current financial climate, a lot of people find it hard to find that extra pound to give to charity, so something like the Wish appeal is brilliant for us.”
Zoe’s Place is a home from home for babies who have life-limiting illnesses and complex needs.

It offers palliative and respite care for babies and infants from birth to five years old and can take up to six youngsters at any one time.

For the parents who need to take advantage of its services it provides a vital lifeline.

Jenny Landess, 24, of Linthorpe whose son Josh McMahon,has cerebral palsy, said she would be getting all her friends and family to collect tokens for the baby hospice which has done so much for her son.

“Zoe’s Place is absolutely excellent. They are lifesavers. It’s so good to get some respite. It costs £850,000 a year to run so every little helps.” Mike Farrell, 41, of Marton, whose daughter Megan has cerebral palsy, said: “Zoe’s Place is absolutely fantastic especially with Megan. She suffered another seizure a couple of weeks ago while she was at Zoe’s Place and the staff handled it perfectly.

“When you go into a place like this you realise how dedicated and professional the staff are - it’s a place that really deserves as much as we can give them. I would urge people to get behind Zoe’s Place, the more money it gets the better.”

This year the Wish campaign has £30,000 to give away - the more tokens the baby hospice collects the more money it will walk away with.

To support Zoe’s Place send your Wish tokens to: Zoe’s Place Baby Hospice, Crossbeck House, High Street, Normanby, Middlesbrough, TS6 9DA

ICT applications should consider handicapped users from the start,
Writer: Sasiwimon Boonruang

Nong Oay and Nong Note enjoy taking photos for visitors and editing them with the Photoshop program.

The Mattayom 1 student cannot articulate, but she is able to communicate with teachers and friends with a picture notebook and the Talking Switch speech assistive equipment, which helps her to partake in activities in the classroom.

Beside Nong Kob, at the United Nation building recently, was fellow wheelchair user Nong Oay, who has weak bones due to the inherited disorder of collagen synthesis, and Nong Note, who suffers muscle weakness.

All are students at Srisangwal School who today enjoy using not only the assistive technology, developed by the National Electronics and Computer Technology Centre (Nectec), but also computer programs such as Photoshop.

Visitors and delegates at the "ITU Asia-Pacific Regional Forum on mainstreaming ICT Accessibility for Persons with Disabilities" recently witnessed the students' capabilities in decorating and editing snaps.

"I didn't think I would look so good in the photo, thank you!" said one visitor, chuckling over a picture and inserting a 100-baht banknote into the donation box.

One woman who had Nong Kob take her photo and decorate it with a yellow butterfly was surprised when she received the photo and said even able-bodied adults could not produce such a high quality of work.

"How old are you?" she asked Nong Kob, who answered "11" on the computer screen.

These are technologies that help bridge the gap between people with disabilities (PWDs) and those without.

However, exposure to ICT for PWDs has been limited in some aspects.

Sawang Srisom, officer of Disabled Peoples' International Asia Pacific, noted that technology has progressively developed but there is still a conflict between demand and supply.

It will help, at least in the short term, if the government puts measures in place to enable PWDs to buy equipment at a lower price. In the long term, the state should have a policy for PWD employment.

In the workplace, he said, employers should install technology such as speech synthesis software for the visually impaired, or special mice designed for physically disabled people.

Sawang further encourages the introduction of closed caption or sign language options on television, adding that this would be useful not only to deaf people but also anyone trying to watch TV in a noisy environment.

Furthermore, Shadi Abou-Zahra, W3C web accessibility specialist, said graphical images on the internet are not suitable for sight-impaired people. They might be able to use screen readers for the text but the graphical information can not be output automatically. Video online will become more widely available, but captioning is rare.

If the website cannot be navigated by keyboard, PWDs may use a special mouse to do so. But the majority of websites have not been designed with the principles of accessibility and are therefore difficult for PWDs to use.

In order for the web to become truly accessible to all, it had to be coded properly, said Shadi.

The specialist noted that W3C has developed a technical standard for the web to adopt internationally recognised guidelines.

"The biggest challenge is not technology, but awareness-raising," he said, adding that people who develop websites typically don't consider the requirements of PWDs.

Training the developers, policy makers and decision makers is very important because they have to work together.

The issue of ICT accessibility for PWDs has significantly raised awareness.

Thailand recently hosted the first forum to be staged in the Pacific region.

In the knowledge-driven information age and society, it is timely to design and implement an inclusive ICT policy to provide digital opportunities to PWDs, according to Dr Eun-Ju Kim, head of the ITU Regional Office for Asia and the Pacific.

Citing the World Health Organisation, Kim said 10 percent of the world's population - or about 650 million people - have some form of disability, with the number increasing every year due to various factors such as war, natural disasters, unhealthy living conditions, and the absence of knowledge about disabilities and how to manage them.

In Thailand, there are around 1.9 million PWDs, or 2.9% of the population, many of whom encounter barriers when using ICT products and services.


Dr Eun-Ju Kim says the industry should have more R&D to come up with the right design products and services for disabled people.
ICT accessibility has been practiced to a very limited extent. Existing ICT products and services were not designed with principles of accessibility in mind and are therefore difficult for PWDs to use. The most obvious example is web accessibility.

"It costs dramatically less to implement web accessibility at the design stage than to retrofit it later," said Kim.

"Thus, it is worth emphasising the important roles of not only policy-makers and regulators but also industries, which can contribute not only to appropriate designs but also to affordable ICT products and services for PWD, taking into account the potential markets in the aged society."

The ITU Regional head urged that it is time to present PWDs with digital opportunities through ICT inclusive policy and regulations such as code of conducts in the information society so that assistive technologies, devices and applications specifically designed for PwD can be accessible and affordable to use.

She pointed out the ITU program of "Building the Capacity of Harnessing ICT for Disempowered/Marginalised Communities in Sri Lanka" from which representatives came to Thailand to exchange experiences.

They feel Thailand enjoys far more advanced technology in ICT applications and for PWDs and when they go back to Sri Lanka they can raise awareness of the issue to encourage more and better technology and applications available for their disabled people.

"I want to continue this kind of exchange program in the future as part of this project," said Kim.

"Next year, the program may be carried out with Mongolia and another countries."

Her Royal Highness Princess Maha Chakri Sirindhorn, who Kim said is a leader in the field, and who is also the one of ITU patrons, is supporting ICT in a wide range.

However, she said this is not the end, but just a beginning which still requires a lot of work to ensure equal access for all to ICT.

Kim is encouraging the industry to focus more on research and development to come up with right design products and services for PWDs to help them enjoy as full a life as possible.

Significantly, she said, many developed countries such as Japan and around Europe are seeing a rapid increase in population age, so their ICT industries are adapting to support the socio-economic needs of a growing and ageing demographic, including the different forms of disabilities that accompany the trend, such as the loss or reduction of dexterity and senses.

A decade from now, it is envisioned that these countries will have adapted so that their entire populations should be able to benefit from ICT, regardless of disabilities.

"I want to use this momentum to raise awareness for the industry, operators, and regulators," said Kim, adding that ITU will deliver appropriate training to various stakeholders, including policy makers, regulators and others interested in mainstreaming, developing and implementing ICT accessibility issues for PWDs at national, sub-regional and regional levels, and will continue implementing projects through close collaboration with various partners such as the ICT Ministry, Nectec and the National Telecommunications Commission, and others.

According to Axel Leblois, executive director, Global Initiative for Inclusive ICTs (G3ict), ICT has become a significant factor for economic and social development in all countries around the world. People's ability to use mainstream ICT applications and devices directly affects their ability to fully participate in education, employment, culture and leisure, civic or social activities.

Television, mobile phones, radios, computers, websites and multiple automated digital interfaces are used every day by billions of persons to communicate, access information in their jobs, at school, at home or to interact with government services or e-commerce.

The pervasive usage of ICTs in all aspects of society around the world thus creates a significant risk of exclusion if ICT is not accessible to PWDs.

For Thailand, the government which has ratified the UN CRPD (Convention on the Rights of People with Disabilities) is working on implementation by establishing learning centres nationwide that include assistive technologies such as braille printers and digital talking books for use by the visually impaired. There are also plans to use closed captioning for television programming to promote use by hearing-impaired users.

Friday morning came and the nurses came to sort my bed out so I asked them if I was allowed to go in the shower, I had had a good night and was feeling great, the nurse said yes it's fine we will get some waterproof dressings and then you can go in. The nurse helped me but it was lovely just being back to me doing things and I thought to myself I wonder if I would be allowed home, although didn't say anything. After the shower I got my clothes on rather than my pjamas and sat in my wheelchair to have breakfast. Mum then called me to see how I was doing and said I had just been in the shower and managed fine.

Once everything in my room had beensorted I got out of my chair and went for a walk into the ward and to speak to the Sister on duty to see what the likelyhood was that I would be allowed home, she didn't see why not but it would be up to the man himself, and that he would be coming to see me at some point in the day. I knew with it being friday, he would have clinic and therefore could be around lunchtime.

I decided to go back to my room and get in my chair so that I could get around easier and go to the shops. The Dr who had been looking after me came to see me briefly to make sure everything was fine and it was. I then spend the rest of the time whizzing around in my chair.

It is sod's law that when you are waiting too see someone they never come, but the minute you go out they arrive. This is exactly what happened I had gone off the ward for a few minutes and Mr Papastefanou had been too see me and I missed him, or so I thought because as I was heading back he was coming towards me so we stopped and had a long discussion about how I was and how things would be over next few months etc. He asked if I had any questions so I asked would I be allowed to go home now ? if your not happy then I would stay over the weekend etc, but no he was as happy as I was, the x-ray looked good, and I had done everything he had asked me to do, so off you go with my blessing.

It was really an emotional moment for both of us, because he was leaving the country and going home to greece to work, but we both left on a very happy moment, and Mr Papastefanou, if you are reading this I would like to thank you for everything you have done for me, and I will keep my fighting spirit I promise!!!!!!!!

Safe Journey

Free wheeling

UD helps a 3-year-old with cerebral palsy get around -- while giving other kids hope

By RACHEL KIPP
The News Journal



It was late afternoon, close to dinnertime, and Julianne Harp was ready to leave the playground for home. But when Harp walked toward the exit, her 3-year-old son, Will, headed in the opposite direction, toward the sandbox.

"It's so nice to see him able to do typical age-appropriate behavior -- that outweighs your frustration at him for not listening," Harp said.

Harp clearly welcomes Will's little acts of defiance. Since he was born, there haven't been many times she has had to run after her preschooler.

Will has cerebral palsy and the neurological disorder has left him without much control of his arms and legs. Most of the time, he relies on adults to carry him or to push his stroller. Oftentimes, he sits on the sidelines while classmates at the University of Delaware's Early Learning Center race each other on tricycles.

But this summer is different. For the first time in his young life, Will is joining the chase.

With a turn of a joystick, Will zips around in a power chair custom-made by researchers at the University of Delaware. Using the chair, the brown-haired preschooler can travel in a pack of his classmates from the sandbox to the swingset and back. He no longer has to yell for friends to come to him, or bring up the rear because he had to wait for an adult's help. The research team taught him to drive, and they've been a constant presence over the past several months, watching how Will reacts to his newfound independence.

Will is at the center of a study of power mobility in young children. Researchers wondered if babies could use power chairs to move around obstacles. Now they are looking not just at mobility but at how the freedom of movement affects a child's ability to make friends and interact with the world.

"He's never been reprimanded, he's never acted out. He's the perfect student in class -- and it's horrible," said Cole Galloway, an associate professor at UD and one of the lead researchers. "There's a window right now at his age and if we don't get him mobile and social ... he's the perfect elementary school kid. He's the hidden kid."

Other researchers have conducted studies that involve children using robotic devices, but this work is unique because of the young age of the children and because it looks at the role mobility plays in developing a child's social skills and personality. Researchers hope their work could lead to young children whose immobility now hinders their social development to learning socialization skills to enable them to make friends so they are not behind their peers when they enter school.

The team at UD believes that starting young is essential because by the time a child enters kindergarten, there are fewer opportunities for unstructured play. Children don't usually start using power chairs until early elementary school; as toddlers and preschoolers, they often rely on adults to carry them from place to place. UD researchers are worried that, by age 6 or 7, children without mobility have already fallen behind in terms of learning to take risks and initiate the spontaneous interaction that is often so key to making friends.

"Will has developed tremendous focus and attention. What this helps him to do is engage in more cooperative play and to navigate his world," said Laura Morris, associate director of the Early Learning Center. "There are very few 3- and 4-year-olds who don't challenge the world in some way. That's how a child learns to take risks, how they learn to push limits and how they learn to get what they want through lots of different strategies. Will hasn't had the same kind of early opportunities to do that."

Taking it to the next level

When Galloway's team began studying power mobility in children, their work was confined to the lab and the Early Learning Center gym. There, researchers observed babies from 4 months to 15 months old as they drove power chairs with robotic brains and sensors to help them avoid walls and bumps.

To take the study to the next level, however, they had to introduce the obstacles of daily life.

"It's immensely different to be using this technology in a real community," Galloway said. "Now it's not just about the technology, it's about Will."

Will's family got involved in the research on the advice of Tracy Stoner, his physical therapist. Crawling, walking and getting in and out of different positions have always been a challenge for him, and Stoner thought he might be motivated if given the power to easily move on his own.

"He puts out so much energy when he's trying to walk; he's working so hard that he's just dripping with sweat trying to get where he's going," Stoner said. "I know he's working his little heart out. And one of the other reasons I saw Will as being a candidate for power mobility is if I have to work so hard to get 50 feet to a toy I want, if I'm so exhausted by the time I get there, I don't want to play anymore. It's sort of negative reinforcement: I won't move because it takes so much energy, and I hate walking because it's taking so much energy."

Will started working with the UD researchers when he was 2 1/2. First, he learned to drive what the team calls his rocket chair. Although the chair is one of the smallest power chairs available, it was too bulky for the classroom. Will could use it only in the Early Learning Center gym or outside on the playground.

In July, however, Will started using UD2, a power chair about the same height as his classmates' tricycles. A green and blue booster seat with a tray is attached to the robot, which has indoor/outdoor wheels and a wireless joystick. It has a robotic brain and sensors that researchers covered with a red foam swimming noodle because Will is adept enough to avoid obstacles on his own.

"It took him three months to learn to drive when he started," said Christina Ragonesi, a UD graduate student working on her doctorate in biomechanics and movement science who taught Will to drive the power chair. "The coolest part of the training was when he learned to drive away. I'd say it was time to leave the gym and he would drive away from me. It showed Will was learning to make his own decisions."

Learning to drive

Before Will began using UD2, researchers filmed him during class to see what his life was like without the power chair. It was business as usual at the Early Learning Center, a day care facility that does double duty as a living laboratory.

"He would just sit, he had to rely on teachers to move him from Point A to Point B," Ragonesi said. "He couldn't really make his own decisions unless he called a teacher over."

The power chair is only one of the devices that Will uses to get around. The researchers, his physical therapist and his parents agree that he needs to spend time each day using technology like a gait trainer that gives him the support he needs to walk.

"He needs both. He can't just have all the power and he needs to learn standing and he needs to use the gait trainer," Stoner said. "He needs to have options for both so he has time to learn and time to explore and time to walk and transition within tight spaces. Right now, no matter how small the robot is, there are places where it can't go so he needs to learn to walk."

When the researchers started training Will, they thought he would "just take off," after learning to drive the chair, Galloway said. That didn't happen. Soon after he started using the device, a group of classmates started a game of hide-and-seek. Will was "it," but after counting to 10 while the other children found hiding places, he didn't move.

"Just because Will understood how to drive in the halls didn't mean he knew how to use his mobility to play a game like hide-and-seek. He could tell you the rules of hide-and-seek but he couldn't use his mobility to interact and know that if I'm going to come seek you, I have to use the power chair to do that," Galloway said. "Even though he knew how to drive, even with the robot in class, it's taking some intervention for him to learn how to go and follow a group to a next activity."

Gradually, Will is getting used to the new circumstances. Recently, he donned a policeman's costume and drove around the classroom pretending his chair was a cruiser. He figured out the chair had enough bulk to push the classroom bookshelves along the floor. The little boy's classmates helped out by moving chairs or toys out of the way of the power chair.

While using UD2 on the playground last week, he was initially more interested in handing Ragonesi shovelfuls of sand from his pail and drawing on his tray table with sidewalk chalk than moving around.

"What color is this?" Ragonesi asked as she helped him draw a star on the tray with lilac-colored chalk.

"Purple," Will replied.

Then Will decided he wanted to drive under the playset. He careened toward the slide. His friends, twins Alexis and Arianna Mayle, ran over. Will shared the sand pail with the girls and the three wandered away together chattering, as Ragonesi shouted after Will to stay off the grass.

"I like to see this," Ragonesi said. "He never used to initiate anything."

The team studied Will's use of the power chair for 19 days. They filmed him for two hours a day and documented how many minutes he spent at each activity and how many minutes he spent interacting with other children and adults. A computer inside the chair provided raw data about Will's movements. Last week, the team was preparing to take the power chair away for three days to see how Will reacted to losing the mobility.

"If he cries and asks for it, we're going to give it to him the minute he cries," Ragonesi said. "After this week, we'll give him the robot from now on. We'll step out of the picture."

Selling the chair

Typically, children with physical disabilities don't start using manual wheelchairs or power chairs until they're about 2 years old, said Dr. Timothy J. Brei, a developmental pediatrician at the Riley Hospital for Children in Indianapolis and medical director for the Spina Bifida Association, an advocacy group. Brei said most children start out using manual chairs.

"Power mobility is very expensive and you want to make sure you give it to someone who can really effectively use it," Brei said.

Although many in the medical community believe that mobility has some bearing on other aspects of a child's development, Brei isn't aware of any studies that document the connection.

"A child at preschool age is learning about who they are separate from their parents and they're learning social skills, interacting with their peers, playing or turn taking," Brei said. "But are they also learning something about who they are and their own sense of self-competence or self-worth or self-esteem? I think that may be as valuable as any just flat-out ability to navigate their environment or cognitive learning or social skills learning."

For the UD researchers to move forward with their work, they need to get power chairs into the lives of other children with physical disabilities.

Galloway gets a call about every two weeks from families who read about his work and want to get their children involved. But the team needs additional funding to expand. Ideally, they hope to form partnerships within the business world and commercialize the power chairs.

UD2 was developed by Sunil Agrawal, a mechanical engineering professor. His group ordered the pieces of the chair, assembled it and then wrote a software program so the device could be used for power mobility. The challenge they face is developing commercially available chairs that have the same technology as Will's but can be sold at a relatively low cost. Each robot costs between $15,000 and $20,000; the researchers want to develop a chair that could be purchased for $1,000 to $2,000.

The team submitted a grant proposal to the National Institutes of Health that would fund the production of 16 power chairs -- half would be similar to Will's and the other half would be tweaked so the researchers could study add-ons. If several dozen families living in Delaware or across the country started using the chairs, Galloway said, their experiences using the devices in different environments would help the researchers continue to perfect the technology and explore mobility's connection to social development.

"We want you to see UD3 in local grocery stores, in churches and synagogues, in ballparks," Galloway said. "That's in line with our research. That's what pushes us to the next level. This kind of project, it's not just research, it's advocacy, it's policy."

The research is also focused on early education, Galloway said. By the time Will is in elementary school, he said, sitting quiet and still becomes an asset rather than something adults discourage. If the little boy doesn't venture out of his comfort zone now, he may never learn to.

Expressing himself

The adults in Will's life say he's an easygoing, "go-with-the-flow" type. But that's not necessarily good.

"He's got to be the bad boy," Galloway explained. "Luckily, he has administrators and classroom teachers who understand that they need to work for the whole range of behaviors, that a tantrum is part of normal development."

"The other piece is trying to be very careful not to turn Will into something he's not," Morris said. "This is about giving him opportunities to explore his world and being able to step back and see how he does that."

Will uses the power chairs only at school. When he wants something at his home in Newark, the little boy uses a tactic he calls "being a caterpillar:" He army crawls to get what he wants. Galloway helped his parents secure a power chair for a recent family trip to Disney World, and it was often Will who announced, "I know how to do it!" and figured out how to maneuver the device through doorways or tight spaces.

"I don't know if it's the chair or it's his age, but he's starting to express himself more," Harp said. "He'll say, 'I want that,' or 'You stole my toy.' He's much more vocal about what he wants and what he doesn't. On the downside, because he can move from one place to another, his attention span, for one thing, has become less."

While on the playground with Ragonesi last week, Will urged, "Let's go!" when she paused to talk to another adult. Without being prompted, he turned back to retrieve a forgotten sand pail. Paul Urbaniak, another of Will's classmates, grabbed the chair's joystick and Will inched a few feet forward. The little boy didn't appear to mind, but Will's teachers reminded both boys that Paul needs to ask permission before operating Will's chair.

Lately, the researchers and Will's teachers are starting to talk about how to react if Will begins using the chair to break the rules.

"We call him the 13th kid. There are 13 kids in his class, but if he's not mobile, there are 12," Galloway said. "You give him mobility and the teachers say, 'Oh no, you just gave us a new kid.' "

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