MARIA LUISA SALCINES: Life example we should all follow

May 18, 2011

MARIA LUISA SALCINES: Life example we should all follow

The Monitor | May 17, 2011

When my family and I moved to north McAllen in 1970, we moved into a neighborhood filled with kids.

My brother and I spent our free time playing softball on an empty lot or playing in the canal that was at the end of the block with the Cardenas, Tavares and the Klingberg kids.

Oscar Cardenas was the little brother of my friend Carlos, and we all knew him as the little boy with the cool go-cart. I knew when I met Oscar that he had a disability. Oscar was born with Spinal Muscular Atrophy, but when you were around him it was easy to forget and focus more on Oscar.

As a boy he was a little daredevil, riding his go-cart up and down the street. We would beg him to give us rides, then sit on the hood of the car and hold on for dear life.

He loved to go fast, and every once in a while we would fly off the car.

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Posted by stronwi

Run founder still on move

May 17, 2011

Run founder still on move

YorkRegion.com | May 17, 2011 | By Teresa Latchford

Louise Smith is still on the run.

Although the Newmarket native has moved up north, she remains involved in the organization of the local Rebecca Run, an event she founded a decade ago.

The first race at Fairy Lake raised $90,000 for spinal muscular atrophy (SMA) research to find a cure for the neuromuscular disease that leads to muscle degeneration and weakness. The progressive disease results in the inability to walk, crawl, hold one’s head up, swallow and, eventually, breathe.

Her vision, determination and the event’s impact on the community snagged her a 2011 Mothers of Distinction award.

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Posted by stronwi

Making waves; Medical students begin program that allows special-needs kids to splash around with joy

May 16, 2011

Making waves; Medical students begin program that allows special-needs kids to splash around with joy

The Chronicle Herald | May 16, 2011 | By Laura Fraser

Van Bernard’s father lifts him from his motorized wheelchair. The three-year-old wriggles like a fish on a line desperate to return to the water.

Colin Bernard lowers his son to the lip of the pool, watching the boy’s legs dance in the waves made by other swimmers. Van scrunches up his nose — “It’s cold!” — but still holds out his hands.

And then he leans in to his instructor and splashes down. He squeals, smiles and starts kicking, clutching a steady pair of forearms.

“For the first time on his own, when he was in the pool, (it) was incredible; I cried,” Julie Clegg says of her son.

“We have a specialized head float where he can be completely independent and float around the pool. . . . He was pretty intimidated at first, but (then) he kicked, he was moving his limbs and his arms, and it was just a sense of freedom and independence.”

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Many take steps to help Kherington

May 16, 2011

Many take steps to help Kherington

Beloit Daily News | May 13, 2011 | By Rob Baxter

Morgan Elementary staff and students donned walking shoes and put their best feet forward this week in an effort to help a 20-month-old child who is battling a crippling childhood disease.

Melissa Shippee, a teacher at the school, was overcome with emotion Thursday when friend and fellow educator Sarah LaMaster told Shippee that 81 people had participated in a walk-a-thon at the school a day earlier and nearly $2,400 was raised. More money was still coming in Thursday afternoon.

“It has just been amazing,” said Shippee, whose daughter, Kherington, was diagnosed with Spinal Muscular Dystrophy. “This and the event (last month) at Atlanta Bread Company and our PTA’s efforts have just been amazing. It has brought everyone together in ways I could not have imagined.”

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Sydney Potjer, 6, touched many lives during her short, but joyful life

May 12, 2011

Sydney Potjer, 6, touched many lives during her short, but joyful life

The Grand Rapids Press | May 11, 2011 | By Brittany Shammas

BYRON TOWNSHIP — Sydney Potjer believed she could do anything anybody else did.

Although a degenerative condition kept her in a wheelchair, the 6-year-old would see a person with a flat tire and want to help them. She saw someone snowboarding on TV and wanted to try it.

“If you asked her, she was the fastest kid in the class,” said her father, Tim Potjer. “She’d be in her power chair and they’d be chasing her around and she’d say, ‘Dad, I’m the fastest.’”

Sydney died Sunday after going into cardiac arrest, likely a complication of Type 1 spinal muscular atrophy.

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Paralympian launches Red Shield Appeal

May 12, 2011

Paralympian launches Red Shield Appeal

Port Macquarie News | May 13, 2011

AN INSPIRATIONAL Paralympian will arrive in town next week to help launch The Salvation Army Red Shield Appeal.

Diagnosed with spinal muscular atrophy at birth, Karni Liddell defied doctors’ expectations that she would live past her teenage years and went on to become a Paralympic swimmer.

Port Macquarie-Hastings Salvation Army Red Shield Appeal business committee chairman Glen Towle said he hoped as many people as possible would attend the breakfast to support the organisation and hear Ms Liddell speak.

“She’s an outstanding, high-quality presenter who has an amazing, inspirational story to tell,” Mr Towle said.

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Anthem teen closing door on high school

May 12, 2011

Anthem teen closing door on high school

The Arizona Republic | May 12, 2011 | By Betty Reid

It took friends to open doors for Austin Cuaderno.

The 18-year-old Boulder Creek High School senior, who is in a wheelchair because of spinal muscular atrophy, is one of 505 students receiving a high school diplomas on May 26. When the teenager closes the door on high school, he will wheel away with a weighted grade-point average of about 3.4, earned from honors classes such as physics and math.

The shy, friendly teenager credits his achievement to friends.

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Eileen Marie Barclay, 52, counselor

May 10, 2011

Eileen Marie Barclay, 52, counselor

The Philadelphia Inquirer | May 10, 2011 | By Sally A. Downey

Eileen Marie Barclay, 52, of East Oak Lane, who counseled others while struggling with her own crippling disease, died of pneumonia Thursday, May 5, at the Hospital of the University of Pennsylvania.

Ms. Barclay had spinal muscular atrophy, a type of muscular dystrophy.

Her father, Joseph, made her special braces until she needed to use a wheelchair when she was 9. Her mother, Rosemary, was an activist for children with the disease, serving on the board of the Philadelphia chapter of the Muscular Dystrophy Association of America.

“She was raised to believe she could overcome any obstacle,” said her sister, Bunny Schnell.

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Friends Raising Money For Inspirational Family

May 9, 2011

Friends Raising Money For Inspirational Family

CBS Atlanta | May 8, 2011 | By Katie Brace

At 1 1/2 years old, Skylar Jones lets you know what she likes with her eyes. She has a rare genetic disease called Spinal Muscular Atrophy or SMA.

Kyle Jones, father, said, “The strongest she was, was when she was born.”

Skylar’s muscles are basically wasting away and there’s no medical miracle to change that.

Ashley Jones, mother, said, “Right now she breathes with her diaphragm because her muscles around her lungs don’t work.”

It means either Ashley or Kyle can never be far away, especially if she’s off the breathing machine.

Click HERE or on the image below to learn more…

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Doing his part in search of a cure

May 7, 2011

Doing his part in search of a cure

When Lemont grandfather Ken Emerson found out his 4-year-old grandson was diagnosed with spinal muscular atrophy, he knew he had to do something. He figured he would do what he does best — play golf.

On May 21, the Lemont man will host the “Tee off with the Drive to Cure SMA in Honor of Ryan” in Lemont to benefit young Ryan Manfre, who was diagnosed with SMA when he was just 1 year old. The rare disease has inspired Emerson to use his hobby to find a cure.

“I am interested in helping to raise money for research,” Emerson said. “It’s just as important to bring awareness to this disease to the world because I feel strongly about it.”

Click HERE or on the image below to read more…

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