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

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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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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Fund-raising event aimed to help pioneering research into illness

April 27, 2011

Fund-raising event aimed to help pioneering research into illness

The Star | April 27, 2011

A DOTING dad whose son has a muscle-wasting disease for which there is no effective treatment or cure is raising cash for pioneering research at a world class institute in Sheffield.

Mohammed Amin’s son Saeed was diagnosed with spinal muscular atrophy or SMA when he was two.

Tthe degenerative neurological condition prevents nerve cells in the spinal cord functioning properly, causing muscles to weaken and eventually stop working.

The prognosis for patients with the disease – similar to motor neurone disease in adults – is not good, with some given a life expectancy of only two years.

But 14-year-old Saeed has battled bravely through the condition – resorting to a wheelchair full-time only three years ago.

Click HERE or on the image below to read more…

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Bristol mum raises £11,000 for charities in memory of her son

April 23, 2011

Bristol mum raises £11,000 for charities in memory of her son

Evening Post | April 23, 2011

A MUM raised £11,000 through a ball in memory of her son who died a year ago.

Mary Abrahams felt the star-themed ball would be the perfect way to mark a year since the death of 14-year-old Ryan.

And she managed to raise a total of £11,000, which was split between two charities that supported the family – the Jessie May Trust and Children’s Hospice South West.

The Bradley Stoke teenager was born with brittle bones and spinal muscular atrophy, but never let his disabilities get in the way of doing what he wanted to.

The former Evening Post Gold Star winner played wheelchair football for Aston Villa’s team and also played table-top cricket.

The ball at Ashton Court Mansion was held two days after the anniversary of Ryan’s death and his mother found organising the event helped occupy her during a difficult time.

Click HERE or on the image below to read more…

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My Voice: Lisa Evans

April 20, 2011

My Voice: Lisa Evans

Melbourne Weekly | April 19, 2011 | By Lisa Evan

Lisa Evans, 41, will embark on a two-week trek in France later this year in honour of her 12-year-old son Jack, who has a degenerative neuromuscular disease.

Jack was diagnosed with spinal muscular atrophy when he was eight months old and we were told not to expect him to live past two. He suffers from a genetic disease which, in short, affects the motor neurons in his spine and causes his muscles to waste away. As a result, Jack is unable to sit, crawl or walk. He cannot swallow, so he is fed through a tube and he’s also susceptible to recurrent chest infections. He relies on a ventilator to breathe at night and always has a suction machine with him to clear secretions. Jack spends his life in an electric wheelchair.

The condition occurs in one in 10,000 live births and is the greatest genetic killer of kids under the age of two.

I’m taking part in the seventh ChallengeMD! in Mt Blanc, France, to raise more than $250,000 for the Muscular Dystrophy Association. There’s 17 Aussies participating in the 14-day trek, from June 24 to July 8, which circumnavigates Mt Blanc through France, Italy and Switzerland.

Click HERE or on the image below to read more…

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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

Vodpod videos no longer available.

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…

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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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‘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…

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