These RNC protesters are determined to be heard

August 28, 2012

Orlando Sentinel | August 28, 2012 | By Scott Maxwell

TAMPA — Karen Clay is using alcohol swabs to clean and sanitize her son’s ventilator.

Michael Clay is 31 years old — and all of 73 pounds. He lays immobile on his back in his bed, staring at the computer monitor mounted above his bed.

Spinal muscular atrophy has robbed his body of the ability to move much of anything other than his eyes and forehead. Yet he is able to speak using technology similar to that used by Stephen Hawking.

Sensor pads on his forehead detect nerve pulses, allowing him to control a computer.

“Would you mind stepping into the kitchen?” his computer voice asks me.

Karen needs to finish dressing and prepping Michael for their protest.

The family lives in South Tampa, a few miles from the Tampa Bay Times Forum, where all the glitz and glamour of the convention are on display.

The Clays’ life is anything but glitzy. Yet they are happy. They simply don’t want to be ignored.

“I tell people I’m an M-O-M,” Karen explained, “a mother on a mission.”

Karen, Michael and her other son, 29-year-old Brian, are protesting this week to remind the candidates and delegates of the needs of the disabled — and to put a real face on the impact on the potential cuts and changes to Medicaid that Mitt Romney and Paul Ryan have proposed.

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September’s legacy: Taking on Harvard in a wheelchair

August 27, 2012

CNN | August 27, 2012 | By Ben Mattlin

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.

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Richmond Family Learns, Lives, And Grows Despite Struggles

August 25, 2012

WTVQ-ABC | August 24, 2012 | By Amanda Stevenson

[VIDEO]: Richmond Family Learns, Lives, And Grows Despite Struggles

Danika Stockings, 15, has spinal muscular atrophy (SMA) a disease that causes muscle damage and weakness.

Unfortunately, it gets worse over time–as a child, Danika could walk with braces, but lost the strength to do it over time.

Now, the teen’s confined to a wheelchair.

Showering, dressing, and even getting up in the morning are all processes that others have to help her with.

Danika was adopted by the Stockings from Russia when she was 11 months old.

They brought her home on Christmas Eve…a running joke in the family that she was that year’s Christmas gift.

Four months later, though, she was diagnosed with SMA.

Nearly fifteen years later, she’s completely used to the disease…and strives to make her life as normal as possible.

Her younger sister, Ellie-Kate, even helps, offering to take the responsibility of caring for her once she’s old enough to do so.

So even despite the hardships of having SMA, Danika and family wouldn’t have it any other way.

You can help people like Danika in your own community by donating during the MDA “Show of Strength” on Sunday, September 2nd from 8 p.m. until 11 p.m right here on ABC 36.

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Win One for FDR — and the Wheelchair Warrior in Your Life

July 26, 2012

Huffington Post | July 24, 2012 | By Don C. Reed

One recent night in Washington D.C., I saw two statues of Franklin Delano Roosevelt: one was huge, capturing the outsized spirit of the man, a green-bronze cape sweeping around him. The second was more accurately life-sized, showing a small wheelchair (then made of wood) so that you realized what the man had to endure, as he fought to lead America.

Both statues were accurate.

Franklin Delano Roosevelt was America’s only paralyzed president. He lost the ability to control his lower body due to polio, and stayed paralyzed till the day he died.

But he also performed heroically, accomplishing perhaps more than any able-bodied president in our history.

Through the crushing darkness of the Great Depression, FDR and the Democratic party wove America a safety net.

Social Security: different sections which attempted to protect the old, the poor, the sick and the unemployed ;

Securities Exchange Commission to regulate the uncaring greed and cruelty of Wall Street;

The Tennessee Valley Authority, which converted devastating floods to useful hydro-electricity;

These and much more were all made possible by that man in the wheelchair.

I propose we honor FDR– or another wheelchair warrior in your life.

There are roughly 3.3 million Americans in chairs, so chances are you know someone on wheels.

For me, it’s easy. I have numerous wheelchair warrior heroes. Christopher Reeve, of course, the paralyzed Superman who made it seem so natural to take on a medical condition incurable since the dawn of man.

And people you might not know, like Karen Miner and Fran Lopes, who for almost two decades have work quietly behind the scenes to raise money for research for cure.

But my personal pick is my son, Roman Reed.

The first night after his college football accident, when he was lying in bed with his athletic career suddenly ended — he asked for a banner to be made, to hang over his bed, reading: “I CAN, I WILL, I SHALL!”

That’s Roman, and he is still the same today. In the 17 years since his neck was broken, he has never wavered, never ceased believing in the possibility of cure. He looks beyond the confines of his own self, so that the struggle of a little girl named Gwendolyn Strong, paralyzed from Spinal Muscular Atrophy, is immediate and vital to him. He knows we are in this fight together, to win or lose.

Click HERE or on the image below to read more…

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UC Berkeley class prepares disabled students for competitive job market

April 23, 2012

UC Berkeley class prepares disabled students for competitive job market

UC Berkeley News Center | April 23, 2012 | By Yasmin Anwar

Vodpod videos no longer available.

If it’s a tough job market out there for able-bodied college graduates, imagine how employment prospects might look to students with cerebral palsy or a muscular or neurodegenerative disease.

Take Jade Theriault, a freshman at the University of California, Berkeley, who uses a wheelchair and worries about how to discuss with a prospective employer the workplace accommodations she will need due to spinal muscular atrophy.

Click HERE or on the image below to read more…

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Avery’s Bucket List (Video)

April 19, 2012

Avery’s Bucket List (Video)

FOX (Houston) | April 17, 2012 | By Sally Macdonald

Vodpod videos no longer available.

HOUSTON – A five-month-old Houston baby is on a mission to teach the world about her fatal genetic disease. You’ve likely never heard of Spinal Muscular Atrophy, but 7.5 million Americans carry the gene that causes it.

Doctors have given Avery just 18 more months to live.

“Nothing will ever be the same as far as what’s important,” said Laura Canahuati, Avery’s mommy.

“I don’t want my daughter to die in vain, and I feel like if someone doesn’t tell her story that’s what’s going to happen,” said Mike Canahuati, Avery’s daddy.

Click HERE or on the image below to read more…

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Ms. Wheelchair Massachusetts encourages others to pursue their dreams

April 15, 2012

Ms. Wheelchair Massachusetts encourages others to pursue their dreams

Community Advocate | April 13, 2012 | By Sue Wamboldt

Marlborough – Most Sunday mornings Patti Panzarino can be found attending church service at Greater Grace Christian Fellowship in Marlborough, 187 Pleasant St. Outside of the sanctuary, she is not only a founding member of the band, OLYPSYS, but she has recently been crowned Ms. Wheelchair Massachusetts.

Panzarino was born with Spinal Muscular Atrophy Type 2 (SMA 2), a genetic disease in which loss of nerve cells in the spinal cord affects the part of the nervous system that controls voluntary muscle movement. Although Panzarino has lived her life in a wheelchair, she has not let her disability get in the way of her dreams.

Panzarino brought her message of empowerment to the Ms. Wheelchair Competition March 3. Her platform of “Creative Perseverance,” born out of life experiences, inspired the judges to crown her Ms. Wheelchair Massachusetts 2012 at the Massachusetts Hospital School in Canton. The mission of the Ms. Wheelchair America Program, and the individual state programs, is to “provide an opportunity for women of achievement who utilize wheelchairs to successfully educate and advocate for individuals with disabilities,” according to the organization’s website http://www.mswheelchairmass.org.

“The platform for my year as Ms. Wheelchair Massachusetts is ‘Creative Perseverance.’ This has actually been the theme of my whole life,” Panzarino said. “I learned to self-advocate from my older sister who mentored me at a very young age. The more that people with disabilities push through obstacles and participate in life, the more people will see us and our acceptance and encouragement to participate increases. It becomes an upward spiral.”

Click HERE or on the image below to read more…

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Mum strives for awareness of Spinal Muscular Atrophy

December 22, 2011

Mum strives for awareness of Spinal Muscular Atrophy

GetReading.co.uk | December 21, 2011 | By Laura McCardle

A mum whose baby daughter died shortly after she was diagnosed with a rare condition wants to raise awareness of it and its treatment.

Donna Bevan’s daughter Nicole was just four-and-a-half months old when she lost her battle with Spinal Muscular Atrophy (SMA) at Royal Berkshire Hospital (RBH) on Saturday, October 22.

Mrs Bevan, of Hunters Hill, Burghfield Common, believes that little Nicole was failed by the RBH and that she may have lived longer if things had been done differently.

Neurologists diagnosed Nicole with SMA on Friday, September 23, and Mrs Bevan felt her husband Nick and she were told very little about the condition except that their daughter “would have 12 months give or take”.

Click HERE or on the image below to read more…

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4-year-old needs device to help her breathe

December 16, 2011

4-year-old needs device to help her breathe

Cincinnati.com | December 11, 2011 | By Mark Hansel

Karah Barry’s mind is as sharp as any other 4-year-old’s.

She is bright and personable, reads, participates in a preschool program and plays on a miracle league baseball team.

Karah’s body, however, prevents her from participating in a lot of other activities common to girls of her age.

She has spinal muscular atrophy type 1, commonly referred to as SMA.

Karah cannot walk, talk, sit, or swallow and she is at high risk of acute respiratory failure. She relies on an automatic cough assist machine and a technique called CPT because she has no ability to clear secretions.

“She is a prisoner in her own body,” said Danielle Barry, Karah’s mother.

Click HERE or on the image below to read more…

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To fully live his life, young Matthew needs wheels

October 18, 2011

To fully live his life, young Matthew needs wheels

The Boston Globe | October 16, 2011 | By Beverly Beckham

H e wants to play hide and seek with his 5-year-old brother, Noah. He wants to see the birds he hears in the trees and the firetrucks that zoom past his house with their sirens on. But he has to wait for someone to carry him to the door to look outside. And birds and firetrucks don’t wait.

Matthew Davidopoulos of Lowell is a typical toddler in so many ways. He’s smart and talkative and curious and bursting to do all that he can. He loves to color and paint and play with his iPad and watch movies (“Cars’’ is his favorite). He has dark blond hair and perfect baby teeth and bright blue eyes.

It’s having spinal muscular atrophy that separates him from most kids his age. It’s being unable to sit or stand or walk or dress himself or even stamp his foot when he gets angry.

He was diagnosed with SMA when he was 8 months old, a week before Christmas. Doctors told his parents, Courtney and Paul, not only that Matthew had a degenerative muscle disease but that he would not live to be 2. They were given a Do Not Resuscitate form to fill out.

Matthew is 2 ½ now, and though his life is not easy, it’s his life. Every night his parents hook him up to a feeding tube to provide the nutrients he needs but cannot get by eating. Every morning they use a machine to clear congestion in his chest that accumulates overnight. Then they bathe and dress him and get him ready for the day. They carry him downstairs, where he has to wear a special vest for about 20 minutes to further loosen congestion. Then he is strapped into a “stander’’ for two to three hours of weight-bearing pressure on his legs. Three times a week, he has physical therapy, once a week he has play therapy and aqua therapy, and once a week he goes to a playgroup with typical kids.

All this, and he is a happy child.

Click HERE or on the image below to read more…

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