Climbing for Silas: Fundraisers to help 16-month-old boy with genetic disease

June 20, 2011

Climbing for Silas: Fundraisers to help 16-month-old boy with genetic disease

Pittsburgh Post-Gazette | June 20, 2011 | By Pohia Smith

Fewer than 1,000 infants and children are believed to be living in the United States with a life-threatening genetic neuromuscular disorder called SMARD, or spinal muscular atrophy with respiratory distress.

One of them is 16-month-old Silas Werner of Friendship, the son of John and Lisa Werner, who both are recessive carriers of the SMARD gene. His sister Valentia apparently died of the disease a year before his birth, although the cause was initially given as sudden infant death syndrome, or SIDS.

With SMARD, the patient has extreme respiratory distress because his diaphragm becomes paralyzed. He also has progressive severe body weakness, predominantly in the lower limbs. Silas’ disease now has progressed to most of his body, excluding his face and internal organs.

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Posted by stronwi

Maple Ridge students making wishes come true

June 17, 2011

Maple Ridge students making wishes come true

MapleRidgeNews.com | June 17, 2011 | By Colleen Flanagan

Students at Alexander Robinson will be making a sick little girl’s dream come true this year.

After raising $2,783.06 for the Make-A-Wish Foundation of B.C. and Yukon, they learned that they will be sending an 11-year-old girl suffering from Spinal Muscular Atrophy (SMA), to see Glee in concert in Toronto and to also meet the cast.

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Bellevue girl keeps on smiling while battling disorder

June 10, 2011

Bellevue girl keeps on smiling while battling disorder

Sandusky Register | June 7, 2011 | By Alissa Widman

Kylie Niedermier’s little brother loves to greet her with a kiss on the cheek.

Luke Niedermier, 2, gently approaches her chair, lingers for a few seconds, and then scurries away with a grin on his face.

“I don’t call him my little brother, I call him my ‘little bother,’” Kylie, 6, jokes. “He’s silly.”

She urgently calls for her mother, Heidi Niedermier, to wipe off his “slobber spot.” She can’t do it herself.

And if she wanted to, Kylie couldn’t chase after Luke to return the favor.

Kylie lives with Type I spinal muscular atrophy, a genetic disorder characterized by progressive loss of muscle control and weakness.

It’s left her almost completely paralyzed.

About one in 6,000 to 10,000 infants are born with the disorder each year, according to the SMA Foundation’s website.

The condition requires constant care.

Kylie is fed through a tube and is often hospitalized for respiratory treatments and intubation because of her weak lungs.

But if you ask Kylie, she’s just an ordinary girl, with a love of dress-up, puppies and especially the color purple. She can do a lot of things — read, sing with Luke, and identify any bird that flies by her window.

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Brody’s smile makes efforts worthwhile

June 10, 2011

Brody’s smile makes efforts worthwhile

The Examiner | June 6, 2011

MAYFIELD mother of three Bianca Dance said a weight was lifted off her shoulders yesterday – and a smile from her three-year-old son Brody Westergreen was just the icing on the cake.
Ms Dance spent the past three months organising a family fun day, which was held at the Rocherlea Football Ground yesterday.

Money raised at the event will help buy Brody, who has type two spinal muscular atrophy, an electric wheelchair.

Brody’s debilitating disease is slowly robbing him of his ability to move his arms and legs, and will one day take his life.

More than $20,000 had already been raised for the wheelchair, and Ms Dance was hoping an extra $10,000 would be raised at the fun day.

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A van for Baby Michael: Albrightsville family loses vehicle for disabled son in fire

June 3, 2011

A van for Baby Michael: Albrightsville family loses vehicle for disabled son in fire

Pocono Record | June 2, 2011 | By Vinny Vella

Kerry Benincasa lost her van on the backroads of the West End.

At a stop sign along Route 903, her brakes weren’t responding. As she coasted to a stop and put the vehicle in park, smoke billowed from under the hood.

“Jump out of the car as soon as Mommy stops,” she told her 5-year-old daughter Cecelia.

The two escaped unscathed. The same can’t be said about the family vehicle: A brake line needs replacing.

But Benincasa of Albrightsville is more thankful than upset. She considers the whole ordeal an act of God.

“If it didn’t happen yesterday, it would’ve happened today, while we were traveling on I-80 with Michael in the car,” she said.

Michael is Benincasa’s soon-to-be 4-year-old son. He was born with Type 1 Spinal Muscular Atrophy, a condition that has rendered him quadriplegic and unable to breathe without assistance.

Had he been in the van — a 1986 Chevrolet outfitted with a wheelchair lift — Michael would’ve been strapped in and difficult to move.

“He’s completely flaccid; he can’t even lift his head up,” Benincasa said.

Outside the van, Michael would still not have been safe. Without his bulky portable ventilator, he would have been unable to breathe.

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‘The Amazing Race’ meets ‘Survivor’ in Lowell — and it’s all for charity

May 31, 2011

‘The Amazing Race’ meets ‘Survivor’ in Lowell — and it’s all for charity

LOWELL — Ever worn a bologna mask? Careened down a 200-foot Slip and Slide covered in chocolate syrup and soap bubbles? Kissed a dog’s um … hindquarters?

No? Well, then you’ve never participated in SmithFest.

“It is like a mix of The Amazing Race, Survivor and the craziest scavenger hunt you could ever imagine,” Fred Smith, 31, says of the massive, one-day extravaganza that last year raised $5,000 for Kids in Disability Sports.

This year, the event, scheduled for Oct. 1 at Lowell Memorial Auditorium, will benefit the Make-A-Wish Foundation of Massachusetts and Rhode Island, and Families of Spinal Muscular Atrophy.

The latter is in honor of Coby Kulis, the 5-month-old son of Dave and Lori Kulis of Methuen who died of the devastating motor neuron disease earlier his year. SMA is the number-one genetic killer of children under the age of 2, affecting 1 in every 6,000 babies.

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Raising funds for all-terrain wheels

May 27, 2011

Raising funds for all-terrain wheels

Mercury Daily | May 27, 2011 | By Grier Williamson

COURTNEY Haddrick, 17, is on a mission to make Tyson Jensen’s dream a reality.

Tyson, 25, is confined to an electric wheelchair.

“He has a degenerative disease called spinal muscular atrophy (SMA) which affects his muscles, making them weaker as he gets older,” Miss Haddrick said.

Mr Jensen visits the Mackay Engendi Disability Respite and Activity Centre and his dream is to own an ATV (all terrain vehicle) wheelchair that will enable him to do the things he enjoys, such as going to the beach, fishing and his favourite hobby of pig hunting.

She is independently raising funds through her own initiative. “I have a made a tip jar with a sign that tells people what the money goes towards. I have it at my workplace at Black’s Beach Seafood,” she said. “I have been fundraising for three weeks with the tip jar and so far I have raised about $300,” she said.

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‘Prisoners’ raise funds for MDA

May 26, 2011

‘Prisoners’ raise funds for MDA

BGDailyNews.com | May 26, 2011 | By Pam Cassady

About 200 people were arrested and taken to jail in Bowling Green on Wednesday, but all were back on the streets by late afternoon. The arrestees were even treated to a meal and thanked for their visit during their incarceration.

Of course, this wasn’t an ordinary jail and the prisoners were far from criminals. Instead, area business and community leaders willing to help out a good cause went behind bars Wednesday to benefit the Muscular Dystrophy Association.

During the MDA lockup, the “jailbirds” were arrested and brought to the L&N Depot, where they were booked and “sentenced to raising money,” said Amanda Spiehler, executive director MDA of Middle Tennessee and Southern Kentucky.

“I’m being falsely accused,” joked Robert Dean, chief of police at Western Kentucky University, as he sat with other arrestees making calls to get donations. Dean then admitted that he knew he was going to be arrested that day.

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Cutting-Edge Research Saves Local Boy’s Life

May 24, 2011

Cutting-Edge Research Saves Local Boy’s Life

Danville Patch | May 22, 2011 | By Sarah Frank

In August, Danny McHale will turn 11, a milestone most doctors never thought he’d reach.

When Danny was just 5 ½ months old, his parents knew something was wrong. Danny wasn’t sitting up like other babies, and when he was put into a sitting position, he would flop right over.

Danny’s parents, Mary and Joe, took him to a neurologist, and after five minutes were told that he had Spinal Muscular Atrophy (SMA), Stage II, and to take him home and enjoy him while they could. They were told Danny was what doctors termed a “weak type II” because he did eventually sit with assistance as a baby.

They got the devastating news no parents want to hear—it was terminal. They were told their Danny had three to six months to live, and they should make sure to get him baptized.

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Leave a Comment » | California, Clinical Trial, FSMA, Fundraiser, Research, United States | Tagged: , , , , , | Permalink
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Benefit concert for spinal muscular atrophy Saturday

May 23, 2011

Benefit concert for spinal muscular atrophy Saturday

MercuryNews.com | May 18, 2011 | By Eric Louie

DANVILLE — Danny McHale was 6 months old when doctors diagnosed him with spinal muscular atrophy. His parents were told he probably wouldn’t live to his first birthday.

A decade later, the Danville boy is now a fifth-grader at Green Valley Elementary School. Among other interests, Danny is proud of the reigning champion San Francisco Giants and excited over the San Jose Sharks’ playoff run.

His parents and other families dealing with the disease, who on Saturday are holding their 11th annual fundraiser in hopes of finding a cure, said it’s because of children like Danny that they continue their efforts.

“If we stopped, they would think we’ve given up,” said his mom, Mary. “If you stop, the kids think there’s no hope.”

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