TORONTO - Eric Wan sways his head from side to side and the sound of tinkling ivories radiates throughout the room.

The pace of the melody accelerates in tandem with the rhythm of his movements, as colourful shapes twirl in sync on a monitor.

With each bob of the head, the computer engineering graduate is crafting his own little music composition through a specialized software program he played a role in helping to develop.

The Virtual Music Instrument is among several projects he’s been involved with aimed at helping children living with disabilities. The work is being done at Holland Bloorview Kids Rehabilitation Hospital, the largest facility of its kind in Canada.

“There’s a lot of kids that are not able to play music just because they’re not able to hold the musical instrument,” said the 32-year-old Wan. “I think that there’s a lot of children who would like to play music through some kind of way, so this is one of the reasons that I’m interested in this project.”

Unlike many of his peers, he has a true understanding of the importance and need for such technologies to assist youngsters with disabilities.

At age 18, Wan was diagnosed with transverse myelitis — a condition resulting from inflammation of the spinal cord — four days after getting a measles vaccination.

“The doctors actually didn’t know what the prognosis would be,” Wan recalled in an interview at his workstation. “The best case would be that I would be able to walk within months, but it didn’t happen.”

Wan was paralyzed from the shoulders down, forever transforming the life of young man who grew up with a love of computers and playing classical music on his violin.

Wan was initially unable to breathe at all, dependent on life support 24 hours a day. Months afterwards, he was able to breathe on his own, but said otherwise there wasn’t much improvement. After about two years, he was breathing on his own during the day, but he still needs to be connected to a ventilator at night.

Wan admits that early on, there was a period when he was very depressed. But he credits school for keeping him busy and helping him navigate through some of his toughest times.

In the midst of his studies at the University of Toronto, he met Tom Chau, senior scientist with Bloorview Research Institute located on-site at Holland Bloorview. The pair was connected through a respiratory therapist Wan had worked with while in long-term rehab.

After learning about Chau’s research, Wan said he started volunteering at the hospital in the summer of 2005, and returned the following year in the fall as an intern. He has been part of the team ever since.

Wan was brought on board as an undergrad to work with the Paediatric Rehabilitation Intelligent Systems Multidisciplinary lab, or PRISM for short, which focuses its efforts on children and youth with disabilities and special needs, and their families, by drawing on applied science and engineering.

“It was really interesting applying my skills in making software or electronic gadgets that enabled people to be able to do more, and so to improve their quality of life,” said Wan, who had a long-held interest in computer programing, learning the basic type of programming languages at age eight.

Wan operates his wheelchair using a sip and puff straw system to control the direction, while a tiny, reflective sticker affixed to the bridge of his glasses helps him to use the computer.

A camera at the top of the screen detects the motion of his head using the sticker, which reflects light back into the camera, allowing him to move the mouse cursor and operate an on-screen keyboard using his head.

In addition to helping to advance programming on the Virtual Music Instrument, Chau said Wan has brought “tremendous software expertise” and “ingenuity” to the lab, in particular the iPod localization project. The iPod-based system allows an individual who requires use of a ventilator to wander throughout the hospital independently.

Wan also contributed to a device called the Aspirometer for detecting swallowing safety, Chau said.

“I think Eric is absolutely phenomenal as a person and as an inspiration for the lab, and this is aside from all the technical capabilities that he also brings,” said Chau, Canada Research Chair in Pediatric Rehabilitation Engineering.

“As a person, he’s very patient, he has a very congenial personality, very easy to get along with. The other team members, they always go to Eric as a resource in terms of software issues, computer issues, computer engineering issues, and technically Eric brings a wealth of skills to the table. He is a phenomenal software developer.”

Wan is heading back to the books this fall for graduate school, as he pursues a two-year master’s degree at U of T.

He seems keen to continue on his current path, expressing interest in developing software to help children with disabilities gain more control of their environments.

“In particular, there are many children with high level of disability who are not able to communicate with people and they’re not able to do anything to enjoy their environment, for example, turn on a TV or pick up a telephone,” he said. “This is something that I hope that the children will be able to do so that it will improve their quality of life.”

Source: The Canadian Press

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Online:

Holland Bloorview Kids Rehabilitation Hospital: www.hollandbloorview.ca

PRISM lab:www.prismlab.org

Easter Seals Regatta
Sunday, August 29th, 2010
Toronto Harbour

Join us on Sunday August 29th, 2010 at the Royal Canadian Yacht Club for the 2010 Toronto Easter Seals Regatta Beauty & the Beach Bash! This year’s regatta themed Beauty & The Beach Bash welcomes both sailboats and powerboats to sail a course around the Toronto Harbour and experience a fun day on the water. The Easter Seals Sailpast will kick off the activity stations so that participating boats will have an equal chance to experience some friendly competition for prizes.

Beyond the gratitude of the Easter Seals kids and their families, the Toronto Regatta offers fundraising incentive prizes at the $500, $1,000 and $5,000 levels. More details will follow.

Proceeds from the Toronto Easter Seals Regatta help families of kids with physical disabilities with the cost of expensive mobility equipment, communication devices and fully accessible summer camp. Easter Seals owns and operates two fully accessible camp properties and is recognized as an industry leader in providing specialized recreation programs for kids with physical disabilities.

Please see the Toronto Easter Seals Regatta web page for the new 2010 fundraising details.

Hosted by the Royal Canadian Yacht Club

Daniel Dale
Staff Reporter

Lucas Braun was doing worse than he should have been doing in last-period math. His educational assistant knew why. He was playing hockey during both of his recesses. By the end of the day, he was exhausted.

“She goes, ‘If we take one of those hockeys away, he’ll probably learn more,’” says Lucas’ mother, Debbie. “And I said, ‘You know, his legs are only going to work for a short period of his life. And if they’re working now, and he wants to play hockey, I’d rather he play hockey and do poorly in math.’ She was like, ‘You serious?’ I’m like, ‘Yeah. If they’re only going to have their legs until they’re 25 or so, and right now that’s what he loves to do. . .”

Lucas Braun is 13. He is articulate and analytical and serious and a serious sports fan who stored the date of the Maple Leafs’ season opener in his iPod just to make completely totally absolutely sure he doesn’t forget it’s Oct. 7, though he won’t.

Zane Braun is 11. He is a born entertainer whose repertoire of hyperactive comedy includes quick-witted jabs, exaggerated what-who-me smiles, and memorized dialogue from The Suite Life of Zack & Cody. He has also perfected a darker bit: a biting impression of the people who stare at him and Lucas while badly pretending to not be staring.

Both Braun brothers have Morquio Syndrome. When you have Morquio Syndrome, you are a spectacle — to everyone from passers-by on Toronto streets to junior kindergarten students who mistake you for a peer.

The rare disease will likely force Lucas and Zane to use wheelchairs by their mid-20s. It will probably shorten their lives substantially. And it has prevented them from growing taller than about three feet each.

“People tend to stare at us a lot, because we’re so short,” said Lucas, sitting at his family’s kitchen table in Whitechurch, a tiny community northwest of Kitchener near Lake Huron. “At camp, we don’t get stared at. Because everybody has a physical disability. We get to feel — the same. When we’re not there, we don’t feel the same. Before we went to camp, I actually thought that me and Zane were the only ones in the world with physical disabilities.”

“When you go it’s like, wow,” says Zane. “So many people have them.”

They are used to much of what passes for regular in lives filled with unusual difficulties. They see nine medical specialists; the three-hour drives to appointments at Sick Kids are now routine to them. Every two years, they have a surgery in which their legs are broken to straighten them; a good thing, Lucas says nonchalantly, since it prevents them from getting knock-kneed. They tire much more quickly than most children, so they use scooters to get around school; when their mom isn’t looking, they have forbidden scooter races.

But it is only at Easter Seals’ Camp Woodeden, a high-accessibility London facility for children with disabilities, that they feel like they can blend in.

Zane and Lucas, an Easter Seals ambassador, came back in July from their third year at Woodeden. Zane returned with certificates and pottery and photos and, more notably, a girlfriend, with whom he went swimming the other Friday.

She is also 11, and she uses a wheelchair. The courtship went as courtships involving 11-year-olds go: After he wooed her for the first couple days of their 10-day session, she gave him a note instructing him to check yes or no if he liked her. He checked yes, and they were a Woodeden item. He hopes the romance is rekindled next summer.

“I cannot be stuck with them two,” says Lucas, rolling his eyes. “Ten days. . . ”

“Luke, don’t worry,” says Zane, leaning across the table with the type of passive-aggressive smile younger brothers enjoy brandishing at older brothers. “You’ll get a girl some day.”

Like 103 other camps across Ontario, Woodeden is supported by the Toronto Star Fresh Air Fund, which is struggling to meet its fundraising goal this year.

The Braun brothers typically begin pestering Debbie in September to fill out camp applications. They like Woodeden so much because of the sledge hockey and the arts and crafts and the archery and the banquet. Lucas, however, says it is such a treat primarily because of the big lesson it has imparted.

“I’m normal,” he says, “and I’m not alone.”

SOURCE: The Toronto Star

It is widely recognized that recreation and leisure activities are an important component of good health and well-being, and going to movies is undoubtedly a favourite form of recreation for many Canadians. Today, movie theatres and other entertainment venues are more accessible than they were in the past, yet for many people with disabilities who require a support person, going on such an outing remains a rare treat, because the cost is doubled.

In the past, policies on admission fees have varied for support persons or attendants. Even in venues with a policy allowing for free or discounted admission for support persons, it has often been left to untrained employees to decide whether someone truly needs an attendant for daily activities, and is therefore eligible. In other venues, no such policy exists at all.

Easter Seals Canada began correcting this imbalance in December 2004 with the launch of Access 2 Entertainment, a national program for people with disabilities who require the assistance of a support person to accompany them to activities such as attending a movie, concert or sporting event.

Through the program, people with disabilities who require a support person carry a personal Access 2 Entertainment card with them. The card indicates to the ticket seller that the individual does indeed require the support of an attendant. At participating venues, the person with the disability pays the regular admission fee, but the support person receives free or discounted admission.

Diana Gandolfo is one of the 35,000 Access 2 Entertainment cardholders across Canada. Unable to recall all the movies she’s seen in the five years since she received her card, Diana simply knows she has often benefited from the program.

“This card has allowed me to get out more and enjoy more activities such as a memorable trip to the Royal Ontario Museum,” said Diana. “I get excited to see new movies coming out and new attractions that have been added. We are on a tight budget and since I have to pay only my admission, this program helps a lot.”

After its initial success with the program, Easter Seals wanted to expand it, but needed funding to be able to do so. The Government of Canada, through the Social Development Partnership Program—Disability component (SDPP-D), was able to provide Easter Seals with the funds it needed in early 2009. The SDPP-D aims to to increase the effectiveness of the not-for-profit sector in meeting the social development needs and aspirations of people with disabilities. It does this by supporting innovative ways of removing barriers that impede access to programs and services.

As a result of the program’s expansion, the Access 2 Entertainment card is now accepted at over 95% of the movie theatres in Canada. The program also expanded beyond the silver screen to include venues and attractions such as museums, galleries and sporting events, ensuring that like Diana, people with disabilities from across Canada can have the same access as other Canadians to recreational and leisure activities outside their homes.

The Government of Canada provides $11 million per year in grants and contributions through the Disability component of the Social Development Partnership Program (SDPP-D) to help ensure that people with disabilities benefit from the same quality of life as all Canadians. The Program supports innovative solutions to remove barriers through improved access to programs and services, and encourages a wide range of community-based initiatives to address social issues and barriers faced by people with disabilities.

Human Resources and Skills Development Canada’s mission is to build a stronger and more competitive Canada, to support Canadians in making choices that help them live productive and rewarding lives, and to improve Canadians’ quality of life.

SOURCE:

Canadian Tire Jumpstart is a charitable program that helps financially disadvantaged kids get involved in organized sport and recreation by covering registration, equipment or transportation costs. The program is delivered through 290 community Chapters across Canada. Chapters are made up of Canadian Tire Dealers and community partners who identify children who could benefit from the program.

Easter Seals Canada, a new Chapter of the Jumpstart program will work very closely with our provincial member organizations to ensure Canadian Tire Jumpstart funding is directed to children who need it the most.

To apply for Jumpstart funding through Easter Seals is simple. Simply download the Application form (listed below) - fill it out and fax it to 416-932-9844 or scan the completed form to your computer and email it to jumpstart@easterseals.ca; you can email any questions or comments to that email address as well.

Download The Jump Start Application Form — (right click on this line of text click ‘Save link as…’ and save the PDF to your desktop).

NOTE: You do not need to be a child living with disability to apply for Jumpstart funding through Easter Seals. Please share this information with siblings of Easter Seals kids, Easter Seals Summer Camp councilors or family and friends of the organization and its service users.

Scholarship opportunity available to Masters and Doctoral students in Disability Policy

As part of the Canadian Disability Policy Alliance, a Community- University Research Alliance (funded by Social Sciences & Humanities Research Council), 25 scholarships will be awarded over the next five years. There is an opportunity in 2010-11 for five scholarships for graduate studies (3 MSc and 2 PhD). Masters students will be funded
for $5,000 for one year, and PhD students for $10,000 for each of two years.

The Disability Policy Alliance will address four major policy areas: health services, employment, education, citizenship. One of the specific objectives of the Alliance is to prepare Masters and Doctoral candidates for future research careers in the area of disability policy.

Eligibility Criteria: To be eligible to receive one of these scholarships, students must:

• be doing research on disability policy for thesis, specifically in one of our 4 areas: health services, employment, education, citizenship; preference will be given to students studying Canadian disability policy.
• be in second year of Master’s or third & fourth year of PhD program.
• have CURA investigator on advisory committee; preference given if supervisor is CURA investigator.
• involve at least one community partner / disability organization in their research. Preference will be given to students with a disability, to Canadian students, and to students studying at a Canadian university.

TO APPLY:
Please submit the following documents:

• Official transcript
• Curriculum Vitae
• Statement of research objectives
• Career objectives
• Other funding held and/or applied for (candidates may have other
  funding, but not from SSHRC)
• Opportunity to self-declare disability
• Thesis supervisor reference letter.

Successful candidates will be asked to: acknowledge the Disability Policy Alliance as a source of funding; contribute to Alliance’s knowledge translation activities; abide by Alliance’s guiding principles.

Submit applications by Sept. 15, 2010 to:
Mr. Michael Schaub,
Centre for Health Services & Policy Research, Abramsky Hall,
Queen’s University, Kingston, ON, Canada, K7L-3N6
For inquiries: shaubm@queensu.ca or 613-533-6000 (x 79363)

Come Join Us for the 8th Annual JuneFest Event
Join Rotary Cheshire Homes and the Canadian Helen Keller Centre on Wednesday June 16, 2010 for the 8th annual JuneFest event. Come to celebrate Deaf-Blind Awareness Month in Ontario, and learn about the dual disability of deaf-blindness, enjoy a charity BBQ, information booths, silent auction, live music, children’s games and activities, and a whole lot more!

Date: Wednesday June 16, 2010

Location: Mel Lastman Square, 5100 Yonge Street, Toronto, Ontario

Time: 12:00 pm - 6:00 pm.

Please visit www.junefest.ca for more information and updates on the event.

Source: Health Canada
Published: June 1, 2010

ALS Awareness Month (Lou Gehrig’s Disease) - June 2010

As Minister of Health, I am proud to recognize June as Amyotrophic Lateral Sclerosis (ALS) Awareness Month in Canada.

ALS, also known as Lou Gehrig’s Disease, is a neurodegenerative disease affecting approximately 2,500 to 3,000 of Canadians.

ALS can strike anyone, regardless of gender, age or lifestyle. Those living with the disease experience progressive paralysis and, in its late stages, their muscles become so weak that they lose the ability to swallow or breathe. There is currently no cure for this disease.

The Government of Canada recognizes the devastating impact of ALS in Canada. Working with Canada’s major neurological charities, including the ALS Society of Canada, the Government is investing in a four-year national population study of Canadians affected by neurological diseases. This study will inform decisions on how we can better meet the needs of Canadians affected by neurological diseases such as ALS.

During this month, blue cornflowers are sold as a fundraiser to support individuals living with ALS. This flower, hearty despite its fragile appearance, is symbolic of those inflicted with this disease.

Please join me in recognizing those Canadians living with ALS, the family and friends who serve as their caregivers, the ALS Society for its commitment to research and public awareness efforts, and those involved in the fight for a cure. I encourage Canadians to become better informed about this disease and offer support to those who are affected.

For more information on ALS, please visit the website of the ALS Society of Canada.

Leona Aglukkaq
Minister of Health
Government of Canada

Easter Seals Canada has been creating awareness of the Liberated Learning Youth Initiative, which strives to empower students with disabilities through access to a new Speech Recognition transcription system. During the project, participants will be given special user accounts where they will be able to upload recorded lectures and receive speech recognition generated, multimedia transcripts.

The call to participate is now available. Brief application forms for Students, Faculty, and Support Professionals are posted at www.transcribeyourclass.ca

This fall 2010 academic year, there will be 75 user accounts available. Given the project focus, applications from students with disabilities directly will have priority. Applications from Faculty and Support Professionals provide institutions with the opportunity to reserve an account, given that many prospective students are not accessible over the summer/not yet registered for fall courses.

Plan to Attend Canada’s Largest Exhibition for People with Disabilities

FREE ADMISSION

Queen Elizabeth Building Exhibition Place Toronto, ON
Friday June 4th 10am - 5pm
Saturday June 5th 10am - 5pm

People in Motion features 63,000 square feet of exhibits which include adapted vehicles, mobility aids, barrier-free design, rehabilitation services, home health care products, accessible travel, leisure activities, technical aids, employment information, corporate services and government programs.

People in Motion is Canada’s most comprehensive exhibition for people with disabilities of all ages, as well as their families and friends.This event is fun and enlightening.

Everything for a wide range of disabilities is displayed under one roof, making it easy for consumers and professionals to see and compare products and services.People in Motion is for you!

Mark the dates on your calendar NOW and plan to attend June 4th and 5th 2010

Website: www.people-in-motion.com