Disabled San Antonio student lobbies for PE substitute

April 13, 2011

Disabled San Antonio student lobbies for PE substitute

mySanAntonio.com | April 12, 2011 | By Francisco Vara-Orta

A bill championed by a San Antonio high school student and a state representative to get a substitute physical education class for disabled students advanced in the House on Tuesday.

“It is completely unhelpful for children in my situation to sit there and have to experience this,” Jonathon Stach, a wheelchair-using junior in the International Baccalaureate program at Burbank High School, told the House Education Committee.

After testimony from a handful of people supporting the bill, the committee unanimously voted to send it to the House. The bill, proposed by state Rep. Joe Farias, D-San Antonio, could go into effect next school year.

Stach exemplifies the need for House Bill 692.

When he was 18 months old, Stach was diagnosed with spinal muscular atrophy, a motor neuron disease that affects voluntary muscles used for activities such as crawling, walking, head and neck control, swallowing and respiratory functions.

Click HERE or on the image below to read more…

Leave a Comment » | Advocacy, Legislation, Texas, United States | Tagged: , , , | Permalink
Posted by stronwi

RED hosts evening of events for disability awareness

April 12, 2011

RED hosts evening of events for disability awareness

The Daily Targum | April 12, 2011 | By Chase Brush

Students bowled blindfolded and raced using wheelchairs last night during the University’s first Disability Awareness Day, an event hosted by Rutgers Empowering Disabilities (RED), to celebrate Disabilities Awareness Month.

Representatives from disability advocacy organizations and New Jersey Metro Chapter of the National Multiple Sclerosis (MS) Society gave lectures on disabilities while RED performed skits about awareness in the Multipurpose Room of the Rutgers Student Center on the College Avenue campus.

“Disabilities are an extra obstacle that students have to overcome, and there was no organization that serves disabled individuals before, so we wanted to spread awareness as one of the University’s few disabilities groups,” said Vera Kiyanchenko, vice president and co-founder of RED.

RED aims to empower those with disabilities at the University and in the community, and provide them with sources of inspiration and motivation, said Kiyanchenko, a School of Arts and Sciences senior.

Click HERE or on the image below to read more…

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Posted by stronwi

Benefit for Baby Ben’s Spinal Muscular Atrophy

April 11, 2011

Benefit for Baby Ben’s Spinal Muscular Atrophy

FOX | April 11, 2011 | By Scott Wasserman

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MAHTOMEDI, Minn. – A mother dedicated to helping children with special needs ends up needing some help for her and her family. Their son, born with a rare disease. On the surface this could be just another sad story of a little boy who will only live a few more months. But from a friend who offers childcare, a stranger who brings a meal and co-workers organizing a benefit, this is a story of faith, family, and those who epitomize the people of Minnesota.

With three beautiful daughters you could imagine the excitement of Mike and Nicole Newfield when mom delivered little Benjamin 6 months ago. But the excitement turned to concern after just a few months.

Nicole, an occupational therapist noticed Ben had low muscle tone. Then doctors diagnosed Ben with type one spinal muscular atrophy.

Click HERE or on the image below to read more…

1 Comment | Fundraiser, Minnesota, United States | Tagged: , , | Permalink
Posted by stronwi

Jenny named ambassador

April 9, 2011

Jenny named ambassador

Canada East | April 9, 2011 | By Carole Gignac

CAMPBELLTON – It takes 16 muscles to hop on one foot – and plenty more to smile like Jenny Larocque, the 2011 Hop for Muscular Dystrophy ambassador for the province.

Jenny is a Grade 1 student at Lord Beaverbrook School and the fact that she has spinal muscular atrophy does not slow her down. Jenny likes to watch the TV sitcom iCarly, play on the Wii, and she loves to play with her big brother, Shane, and her best friend, Selena. She also enjoys camping. Jenny recently joined Brownies and she is very excited about that.

On April 21, Lord Beaverbrook Elementary School will be hosting a HOP for Muscular Dystrophy event for the students. The HOP for Muscular Dystrophy is a national educational fundraising initiative. At the HOP event, children can hop, dance or move – according to their own ability – to music. Funds raised support the tens of thousands of Canadians affected by a neuromuscular disorder through research for a cure, education and services.

Click HERE or on the image below to learn more…

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Posted by stronwi

Steve Mikita ‘Sits All Amazed’

April 8, 2011

Steve Mikita ‘Sits All Amazed’

Deseret News | April 8, 2011 | By Trent Toone

The list of Steve Mikita’s accomplishments is impressive.

He graduated from Duke and then BYU Law School. He has served as Utah’s assistant attorney general since 1982 and handled numerous cases before the Utah Supreme Court. He has toured the country as a motivational speaker, and he has appeared on “60 Minutes.”

And he has done it from the seat of his wheelchair.

Mikita chronicles the challenges of life in a wheelchair and how he achieved success in his new book, “I Sit All Amazed: The Extraordinary Power of a Mother’s Love.”

Mikita was born with spinal muscular atrophy, a condition that deteriorates the muscles. His parents were told multiple times to prepare for Steve’s death, but he endured. Among the many people and experiences that have shaped his life, he credits three key factors: his mother’s love, the Atonement of Jesus Christ and the example of U.S. President Franklin Delano Roosevelt, who also used a wheelchair.

Click HERE or on the image below to read more…

1 Comment | Inspiration, United States, Utah | Tagged: , , | Permalink
Posted by stronwi

‘Miracle’ ballpark for special-needs kids nears first pitch

April 7, 2011

‘Miracle’ ballpark for special-needs kids nears first pitch

Woodbury Bulletin | April 7, 2011 | By Riham Feshir

For four years, Kelly Madsen has been taking her son to play ball in Blaine every Thursday night.

The hour- and- a half-long drive wasn’t very convenient for the Woodbury mom of 9-year-old Bryce Madsen who suffers from spinal muscular atrophy (SMA), a rare disease characterized by muscle atrophy and loss of motor function.

But Blaine was the one location she could take her son to play “miracle” baseball on his power wheelchair, without worrying about a thing.

Beginning this summer, however, Madsen and a number of other families from the east metro won’t have to drive so far to participate in Miracle League — a nonprofit organization that helps communities build baseball fields for children with mental or physical disabilities.

A Woodbury field will be home to the East Metro Miracle League this summer, when construction will be finished after about three years of fundraising.

Click HERE or on the image below to read more…

Leave a Comment » | Fundraiser, Inspiration, Minnesota, sports, United States | Tagged: , , , , | Permalink
Posted by stronwi

Social Networking and Disability

April 6, 2011

Social Networking and Disability

Quest | March 31, 2011 | By Michael P. Murphy

When I graduated from high school in 1984, there were no tearful farewells to friends and girlfriends while a New Wave soundtrack played in the background like some John Hughes movie.

Frankly, I was relieved to be free to start my writing career, and hopefully be heralded as the next William Gibson. When my science fiction failed to sell, I switched to writing thrillers and, consequently, hoped to be called the next Frederick Forsyth. I’ve been so busy trying to break into the literary (or pulp) world that I’ve never spent much time poring over scrapbooks.

Now that I’m in my 40s, and finding it increasingly difficult to relate to everything from popular music to slang, I wonder whatever happened to the people with whom I’d swap cassettes (that’s how we listened to music in the pre-download days), trade comic books, gripe about school, and gather at my house for weekend-long Dungeons & Dragons sessions.

Like many with disabilities, travel is pretty much impossible for me, so I’ve never attended any class reunions. However, I’ve been able to overcome feelings of isolation through the use of modern technology. In this case, I’m talking about social networking.

Click HERE or on the image below to read more…

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Posted by stronwi

Apple iPad Helps Give Voice To Those Who Can’t Speak

April 5, 2011

Apple iPad Helps Give Voice To Those Who Can’t Speak

FOX 8 (Cleveland) | April 5, 2011 | By Debra Alfarone

When you think of Apple’s top-selling “it” product, the iPad, you probably think of long lines for the product at Apple stores, and maybe even the wealthy techno-yuppies that carry it around, but the iPad is also being used in a more altruistic manner to speak for those who can’t.

Speech therapists at Lincoln Community School in Bayonne, New Jersey have been using an iPad complete with Prologuo2go software (http://www.proloquo2go.com) to teach autistic children, many of whom don’t speak, to communicate.

Speech therapist Carmella Barbieri works closely with the children, “It’s great, so he can express a sentence to his teacher or to his peers and can communicate with others through devices like this.”

The device can spell out commands and requests and speak them aloud, such as “I need apple juice'” or “I need to go to the bathroom.”

Principal Dennis Degnan says the iPad has been a huge success, “It’s automatic feedback and it makes them feel good about themselves.”

Click HERE or on the image below to read more…

Leave a Comment » | Equipment, Lillo's Lullaby, Ohio, Technology, Tribute, United States | Tagged: , , , , | Permalink
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Hanover Girl Raps For Easter Seals

April 5, 2011

Hanover Girl Raps For Easter Seals

Bayshore Broadcasting | April 5, 2011 | By Robyn Garvey

Click HERE to read more and listen to Natalie’s awesome rap!

11 year old Natalie McDonald of Hanover is taking on a fun new project — and she is hoping Grey and Bruce residents will help her out.

Natalie has created her own rap song, explaining why she loves going to Easter Seals camp.

Her rap song is on YouTube and you can find it by typing in Easter Seals Rap.

Natalie’s Mom Christina McDonald is encouraging residents to visit the site and push the LIKE button.

The top video’s will appear on the Easter Seals Telethon on Sunday April 10th.Voting closes on Thursday April 7th.

McDonald says the project is her family’s way of sharing why they love Easter Seals Camp.

She says it’s the one place where children with disabilities can go and forget about their challenges and instead focus on having fun and being a kid.

Natalie has been going to Easter Seals Camp for years.

She suffers from Spinal Muscular Atrophy a genetic disease that attacks the nerve cells in the spinal cord.

Click HERE or on the image below to read more…

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University of Michigan creates nation’s first embryonic stem cell lines to study blood clotting, neurological disorders

April 4, 2011

University of Michigan creates nation’s first embryonic stem cell lines to study blood clotting, neurological disorders

The Detroit Free Press | April 4, 2011 | By Patricia Anstett

In a development that aims to provide better answers for the treatment of disabling, inherited conditions, the University of Michigan announced today it has created some of the nation’s first embryonic stem cell lines that carry genes responsible for specific diseases.The discovery leapfrogs U-M to a top tier of research institutions. Of nearly 100 embryonic stem cell lines in a national registry, only Harvard and Stanford universities have developed reproducible lines to study specific diseases.

U-M’s research involved the creation of two cell lines for hemophilia B, a clotting disorder, and Charcot-Marie Tooth disease, a neurological disorder that causes weakness in the legs, hands and feet.

“This will fuel the fire of discovery” in how the earliest embryonic cells develop markers of a specific disease, said Gary Smith, Ph.D., co-director of U-M’s Consortium for Stem Cell Therapies and leader of the cell-derivation project there.

U-M expects to develop other cell lines to study other disorders, including Huntington’s disease, myotonic dystrophy, Rett syndrome, spinal muscular atrophy and Tay-Sachs disease.

Click HERE or on the image below to read more…

Leave a Comment » | Michigan, Research, United States | Tagged: , , | Permalink
Posted by stronwi

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