A little lemonade for a little boy

August 16, 2011

A little lemonade for a little boy

bcrnews.com | August 15, 2011 | By Donna Barker

PRINCETON — Costumed children dancing down the sidewalk turned a lemonade stand into a lively fundraiser last week in Princeton.

Family and friends of Nolan Shofner, 8, of Princeton hosted the week-long fundraiser to raise money for research into Spinal Muscular Atrophy (SMA), a disease Nolan was diagnosed with when he was just 4 months old.

Nolan and his older brother, Blake, and a group of about 10 friends and family members helped to greet visitors at the lemonade stand each day, set up in front of his house on Elm Place. To attract the attention of passersby, the young people wore a variety of costumes, skateboarded down the sidewalk, put on impromptu dances, and waved people over to the stand.

Click HERE or on the image below to read more…

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Posted by stronwi

Fundraiser turns light on little-known illness

August 12, 2011

Fundraiser turns light on little-known illness

The Sacramento Bee | August 11, 2011 | By Ben Schenkel

Getty Storm is wide-eyed, like most babies. But another unusual trait inspired her parents, Mark Storm and Kate Mathany, to nickname her “owl.”

“She has this depth and wisdom about her – like she was born an old soul,” Mathany said.

Getty shares more with an owl than her calmness and concentrated gaze. Sixteen months old and the namesake of the Getty Owl Foundation, Getty is limited to hooting and cooing. Beginning words like “mama” or “da-da” elude her – and she may never be able to talk.

Getty inherited spinal muscular atrophy (SMA), a genetic disorder that will eventually claim her vocal cords. Just as Getty defies SMA with her every chirp, so have her parents spoken up about the crippling condition.

In March, Storm and Mathany started a foundation to raise local awareness of SMA and support the larger efforts to cure or mitigate it.

Click HERE or on the image below to read more…

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Boy Raises Money Mountain by Mountain

August 10, 2011

Boy Raises Money Mountain by Mountain

Fenceviewer.com | August 10, 2011 | By Emerson Whitney

BAR HARBOR — Ten-year-old Gus La Casse pumps two raised fists above his head in a heavyweight-champ, Rocky-type of gesture, demonstrating how he felt at the summit of Katahdin last week.

Gus climbed Katahdin as the finale in his series of 26 summit climbs in one month, which he organized as a fund-raiser for research into a rare, life-threatening motor neuron degenerative disorder that affects infants and children, called spinal muscular atrophy with respiratory distress (SMARD).

Gus was introduced to SMARD through Silas Werner, a 17-month-old from Pittsburg, Penn., who was diagnosed with the disease at 3 months old and whose mother began seeking answers from the Jackson Laboratory where Dr. Greg Cox is one of few genetic scientists in the world, committed to studying the disease.

Click HERE or on the image below to read more…

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One Local Mom Supports Fundraiser Walk For Two Diseases

August 9, 2011

One Local Mom Supports Fundraiser Walk For Two Diseases

KPTM (Fox 42) | August 8, 2011 | By Meghan McRoberts

Vodpod videos no longer available.
One local mom, Jen Peters, is doing what she can to find a cure for her daughter’s disease.

Ella was diagnosed with Spinal Muscular Atrophy 3 days after her first birthday. It is the number one genetic killer of children under 2 years old.

Peters says Ella is already very independent. Peters describes “even though she can’t do all the things that normal kids do she finds a way, she doesn’t always want to be helped, she’s always saying go away, go away, let me do it.” She takes Ella to Physical Therapy every Monday at Children’s Hospital to slow the progression of the disease, and maintain Ella’s strength.

Peters says Ella may never be able to crawl, or walk, but she hasn’t lost all hope. “She can still sit, she has no problems with feeding or breathing yet, she’s just a little bit weak, so our motto is it can always be worse, so were just grateful for how well she’s doing and just keep working with her so she’s able to maintain her strength as best as she can but want to do everything possible to try to make that happen.”

Click HERE or on the image below to read more…

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Mya’s dream finally comes true

August 2, 2011

Mya’s dream finally comes true

The Border Mail | August 3, 2011 | By Di Thomas

WHAT began as one little girl’s dream to help her friend gain her independence yesterday had its sequel when Rajah Sutherland and her family took delivery of a new car.
Rajah, 6, has spinal muscular atrophy, which means she can’t walk and requires a wheelchair to get around.

The Walk for Wheels for Rajah project began earlier this year when Albury’s Mya Irving, 8, who has cerebral palsy, asked why Rajah wasn’t able to get in and out of her parents’ vehicle in her wheelchair, in the same way she was able to.

In April, Mya walked the 1.2 kilometre-length of Dean Street to kick off the fund-raising for the money to buy and modify a car to take a wheelchair.

In the months since, she has raised $40,000 for the car and its modification costs.

Click HERE or on the image below to read more…

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Local family works to meet daughter’s needs

July 21, 2011

Local family works to meet daughter’s needs

New Richmond News | July 20, 2011 | By Jackie Grumish

Gabbie Bark was given just six months to live.

Thankfully that first diagnosis proved wrong, due to a general misunderstanding about Spinal Muscular Atrophy (SMA). The 2-year-old’s future is much brighter than first suspected.

That doesn’t mean her current health status and her future won’t be filled with challenges.

An inherited disease, SMA leads to the loss of muscle and motor function. The rare disease is the result of the absence of or defect in the individual’s Survival Motor Neuron 1 gene.

“One in 40 people are carriers,” explained Gabbie’s dad, Jamie. “Both me and my wife (Jackie) are carriers, so from a numbers standpoint it’s pretty rare to have both parents as carriers.”

Click HERE or on the image below to learn more…

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Health check on babies improved

July 18, 2011

Health check on babies improved

Leicester Mercury | July 18, 2011

A mum whose baby daughter died from a rare genetic disorder has succeeded with her campaign to bring in a training programme for health visitors.

Lucy Wright’s daughter Georgia died from muscle condition spinal muscular atrophy (SMA), aged seven months, in August 2008.

Since then, her mum, of Melton, has worked with a charity to urge NHS trusts to bring in training for health visitors which would help them to identify the condition earlier.

Leicestershire Partnership NHS Trust, which is responsible for health visitors in the county, is believed to be the first organisation in the country to bring in the training.

Lucy, 30, said: “If the training had been in place when Georgia was born, her condition might have been diagnosed earlier and it would have given her more quality of life in the time we had with her.

“I am pleased my campaign for the extra training in Leicestershire and Rutland has been a success but my work continues.

“I would like to see it introduced in every primary care trust in the country.”

Click HERE or on the image below to read more…

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Alumna Fights SMA One Step at a Time

July 7, 2011

Alumna Fights SMA One Step at a Time

Manhattan College | Spring 2011 Magazine

MANY PEOPLE RUN to stay in shape and achieve a personal best time, but Lauren Lundy O’Connor ’02 is running for a cause. Since 2008, O’Connor and her SMA (spinal muscular atrophy) Asics have been hitting the pavement to raise funds to support the research of SMA and to find a cure.

SMA is the No. 1 genetic killer of infants and young children and results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves. When O’Connor’s nephew Owen was diagnosed with SMA in 2008 at just two months and passed away three months later, she was motivated to start running for a cause, and founded teamrun4owen.com, a website that features information about SMA, Owen’s story, details on upcoming races, donation opportunities and more.

In October 2008, O’Connor ran the Dublin marathon and raised $6,000 for SMA, and all of the proceeds were donated to Columbia University’s Spinal Muscular Atrophy Clinical Research Center. Two years later, Michael Van De Loo ’94 connected with O’Connor through her website after he found out his daughter Ciara had SMA.

Click HERE or on the image below to read more on page 53 of the Manhattan College spring 2011 magazine…

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Lucy’s sponsored head shave in daughter’s name

July 6, 2011

Lucy’s sponsored head shave in daughter’s name

Melton Times | June 30, 2011

A BEAUTY therapist has pledged to lose her treasured locks if she raises £1,000 for charity in her baby daughter’s memory.

Lucy Wright (30), of Southwell Close, Melton, is doing her sponsored head shave for the Jennifer Trust for Spinal Muscular Atrophy – the only UK-based charity that helps families cope with living with the disease.

Lucy lost her daughter, Georgia, to the terminal degenerative disorder three years ago.

Since then she has devoted her time and energy towards raising funds for the charity which has helped her family and others as well as raising awareness of the disease.

To date she has raised nearly £4,000 for the charity.

Click HERE or on the image below to read more…

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Family, Friends, Fans Help Little Boy With Debilitating Disease

June 23, 2011

Family, Friends, Fans Help Little Boy With Debilitating Disease

WFMZ | June 21, 2011 | By Pam Cunningham

ALLENTOWN, Pa. — Several kids celebrating their birthdays threw out a ceremonial first pitch Wednesday night at the R-Phils game at FirstEnergy Stadium.

But one 6-year-old can’t throw because of a disease that keeps him wheelchair bound. Yet, he still went up to the mound and enjoyed his first live baseball game.

Take me out to the ball game sounds like a simple request, but for Skyler Reed it’s a big task.

Skyler’s birthday is Saturday. Six years ago he was born with the most muscle strength, he’d ever have. He has Spinal Muscular Atrophy, or SMA.

Click HERE or on the image below to read more…

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