channelnewsasia.com | August 23, 2012 | By Leong Wai Kit
SINGAPORE: 1984 is a special year for Nurulasyiqah Mohd Taha. It was the year she was born, as well as that of the Paralympic sport she’ll be representing Singapore in, at the London 2012 Paralympic Games.
The ball-tossing game of Boccia from Greece was introduced 28 years ago as a Paralympic sport specifically designed for athletes with a disability affecting locomotor functions.
The aim of the game is to toss a collection of balls as close as possible to a white ball known as the jack.
Nurul qualified for the Paralympics last December, becoming the first para-athlete to represent Singapore in that sport.
Born with spinal muscular atrophy type 2 (SMA II), Nurul’s condition causes nerve cell loss in her spinal cord which in turn limits muscle movement.
So instead of tossing, players in Nurul’s BC3 category use assistive devices to launch the balls.
For many, back-to-school is a season of anticipation, nostalgia, and shopping. For me, it evokes memories of an unsung historical event: the integration of Harvard.
No, I’m not talking about racial integration; I’m talking about the full inclusion of students with disabilities.
When I entered Harvard College as a freshman in 1980, it happened to coincide with a new requirement — all institutions receiving federal funds had to become fully accessible under Section 504 of the Rehabilitation Act of 1973.
I was a 17-year-old lifelong wheelchair-user, born with a neurological condition called spinal muscular atrophy. I’d never walked or stood and my arms were weak as a baby’s. But, as my parents often said, there was nothing wrong with my head.
I had little awareness of the precedent I was setting.
Ari Kinarthy has a severe genetic disability that causes his muscles to waste away. He has been wheelchair-bound since age six – first manual, now electric.
At 23, his health is so fragile that the common cold puts him in the hospital several times a year.
But you wouldn’t know any of that, listening to his debut album, The Lion’s Journey, released June 12. Despite the very limited mobility caused by his Type-II spinal muscular atrophy, Kinarthy was able to compose and record jazz, rock and orchestral tracks, using a technology called Soundbeam.
He says it’s given him a new sense of purpose.
“I love to create things, the joy of creation is really what inspires me,” he said. “I never thought at the beginning that this would be a potential profession for me, but I do consider myself a composer and professional musician now.”
theGSF Launches First-Of-Its-Kind, Free iPad Communication App For Those With Limited Movement
Press Release | February 27, 2012
Santa Barbara, CA — February 27, 2012 — The Gwendolyn Strong Foundation (theGSF), a Santa Barbara-based nonprofit launched “Say Hi! AAC” (Say Hi!), a first-of-its-kind augmentative and alternative communication (AAC) iPad app with the aim of opening the world of communication for those with severe physical disabilities, limited movement, and/or challenged dexterity. The unique app allows the user to communicate wants, needs, emotions, etc. via the iPad without ever physically touching the iPad touchscreen. Say Hi! is available for free in the Apple App Store.
Simple by design, the Say Hi! iPad communication app is completely customizable to suit the specific needs of the user. Once installed on the iPad, the user can create communication pages with boxes of words, phrases, images, and recorded sounds. Say Hi! requires the use of an iPad, which displays what the user would like to communicate, and two additional iPod Touch or iPhone devices. The two additional devices wirelessly connect to the iPad with one iPod/iPhone device acting as the “mover” and the other as the “selector.” The “mover” allows the user to move between customized boxes on the iPad communication app and the “selector” allows the user to select the desired box and “say” the associated word or phrase. Utilizing these connected devices in unison, the user can navigate the Say Hi! iPad communication app with almost no physical movement. Nothing like this currently exists.
Mom Hopes To Build Playground In Daughter’s Memory
CBS Minnesota | February 8, 2012
Raising a big amount of money hasn’t come easy for one Woodbury mom who’s trying to do something special in honor of the daughter she lost.
Madison Claire Millington died August 2004 when she was only 2 years old. When she was diagnosed with Spinal Muscular Atrophy, her mom, Dana Millington, was told that Madison Claire only had one year to live.
Almost eight years later, Millington calls her youngest daughter Emerson a miracle. Emerson had a one in four chance of inheriting the same deadly muscular disease that took her sister, Madison Claire.
To ensure that Emerson wasn’t born with Spinal Muscular Atrophy, Millington and her husband used In Vitro Fertilization and a process which tests the eggs for genetic abnormalities before they’re fertilized.
The time spent with Emerson is special considering the difficulties of parenting a child with SMA.
“(Madison) had her special stroller. We had oxygen tanks we had to take with,” said Millington. “Even going to the park, we couldn’t go through the sand and rocks for me to also be with my other two children.”
It was that specific challenge that compelled Millington to help others. After Madison died, she made it a priority to raise enough money for a playground that every kid could use, in honor of her daughter.
Gwendolyn Strong Foundation Granting Fifty iPads to those with Spinal Muscular Atrophy (SMA)
Press Release | January 10, 2012
SANTA BARBARA, CA — January 10, 2012 — The Gwendolyn Strong Foundation (theGSF), a Santa Barbara-based nonprofit organization dedicated to increasing global awareness of Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children, and supporting families impacted by SMA and other life-altering conditions, launched its newest initiative called “Project Mariposa”. Project Mariposa has a simple mission: to make the world more accessible to those with severe disabilities through targeted technology product grants.
The program will initially focus on granting iPads to those impacted by SMA. SMA is a degenerative disease that causes weakness and wasting of the voluntary muscles. Cognitive ability is never hindered and those with SMA are bright in spite of their failing bodies. The iPad, coupled with the growing application library that accompanies them, are literally life-changing in assisting with communication, education, and independence. theGSF has secured funding for the initial fifty (50) iPads and will be announcing one (1) grant recipient per week for fifty (50) weeks beginning February 3, 2012.
“The iPad is opening up new avenues that were previously impossible,” said Victoria Strong, theGSF co-founder. “It’s large screen size, light weight, portability, and featherlight touch screen make access to education, entertainment, and independence possible and in some cases it is literally allowing children to communicate for the first time in their lives. Its impact is truly incredible.”
Playground for Physically Disabled Children Scheduled for Summer Completion
Woodbury Patch | December 9, 2011 | By Zac Farber
Before Madison Claire Millington died at the age of 2 in 2004, her mother, Dana, was frustrated by Madison’s inability to enjoy any of Woodbury’s playgrounds.
Madison was born with spinal muscular atrophy—a genetic disease that destroys the nerve cells controlling voluntary muscle movement—and she was restricted to a stroller.
“We couldn’t take Madison and our other two children together to go to any of the playgrounds in Woodbury,” Dana Millington said, “because she was stuck in a special stroller and I wasn’t able to get her access to the structure.”
Shortly after Madison’s death, Dana heard about a California organization, Shane’s Inspiration, founded by parents who had lost their son to spinal muscular atrophy. The organization raised money to build playgrounds where children with physical and developmental disabilities could play alongside their “typically able” peers.
Woodham Mortimer aunt braves bungee jump to help ‘amazing’ Nancie
Maldon Chronicle | October 24, 2011
A DARING aunt who is terrified of heights took to the skies at the weekend to raise money for a specialist bathroom for her disabled niece.
Nancie Seaber suffers from a debilitating condition, called spinal muscular atrophy, which means she has no muscle control and is confined to a wheelchair.
But, in a bid to make two-and-a-half-year-old Nancie’s life a little easier, auntie Kellie Jewell did a bungee jump to raise funds for a wet room she can bathe in.
stltoday.com | September 1, 2011 | BY CYNTHIA BILLHARTZ GREGORIAN
Some days, Ben Shaffer, 9, is so weak and tired he can barely walk into his fourth-grade classroom at Tillman Elementary School in Kirkwood.
“He was diagnosed with muscular dystrophy three years ago, but the doctors are not sure they have it right,” says his mother, Jennifer Shaffer.
Nevertheless, Ben’s doctor registered him with the Muscular Dystrophy Association, which lent him a wheelchair for days when walking is too hard.
Taylor Branson, 11, of Eureka, has spinal muscular atrophy type II, and is scheduled to have spinal fusion surgery in coming weeks, her mother, Julie Branson, said. When Taylor returns home, the Bransons will need a hospital bed and a hydraulic sling lift to move her between wheelchair and bed.
Not a problem, said the MDA. The group will have its people at United Seating & Mobility in Earth City collect the items from the MDA’s loan closet in Portage Des Sioux and deliver them to the Bransons for use as long as they need.
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