ETX boy raises money for SMARD research

September 27, 2011

ETX boy raises money for SMARD research

KLTV | September 23, 2011 | By Lauren Callahan

WHITE OAK, TX (KLTV) – An East Texas boy has had Spinal Muscular Atrophy Respiratory Distress, or “SMARD”, since he was three months old.

And until recently, no one was researching the disease.

Now that a laboratory in Maine is devoted to learning more about “SMARD,” three-year-old Dakin Lovelace wants to help.

Dakin Lovelace was a healthy baby, according to his mom Devon. But when he was three-months-old, he stopped breathing. After many doctor’s visits, he was diagnosed with SMARD

“And so as a result of that Dakin can’t breathe on his own, he can’t walk. He can’t sit up on his own. Um, we are very fortunate, though, that he’s so strong. We’re very, very lucky, and he’s happy. His brain is not affected at all. He’s smart as a whip and he’s a happy boy,” says Devon.

His parents resigned themselves to the fact that Dakin would always be in a wheelchair and using a ventilator. Until they learned this summer about the Jackson Laboratory in Maine, where a researcher is starting to study SMARD.

“We lived pretty much three years having no hope whatsoever that anything anybody was doing was going to help Dakin,” Devon expressed.

There are about 60 known cases of SMARD worldwide.

Click HERE or on the image below to read more…

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The Story and Purpose Behind Zane’s Run

September 22, 2011

The Story and Purpose Behind Zane’s Run

Malvern Patch | September 20, 2011 | By Pete Kennedy

Vodpod videos no longer available.

In 2009, Keith and Hillary Schmid lost their 5-month-old daughter, Zane, to type I Spinal Muscular Atrophy, a genetic disease that did not affect Zane’s twin sister Avery.

That year, the Schmids organized Zane’s Run, a 5K held at Sugartown Elementary School. The proceeds of the run helped supply informational packets and car seats to families facing the disease. The third annual Zane’s Run will take place Sept. 25 this year.

View the attached video to learn more about the Schmids’ story.

The Schmids hope to raise awareness and encourage people to be tested for SMA.

“Both parents have to be carriers of the disease to have a child with SMA,” Hillary Schmid said. “[Two carriers] have a 25 percent chance of having a child with SMA, a 50 percent chance of having a child be a carrier, and the other 25 percent chance that the child will be unaffected.”

Click HERE or on the image below to read more…

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In Summer’s memory… SMA Awareness Month in Narooma

September 8, 2011

In Summer’s memory… SMA Awareness Month in Narooma

Narooma News | September 7, 2011 | By Stan Gorton

SPINAL Muscular Atrophy (SMA) Awareness Month was a massive success in Narooma and honoured the memory of the beautiful Summer Carol Lynn Hayes.
This is according to Summer’s mother Tamara Hayes, who is driven by the memory of her daughter who died from SMA earlier this year.

There is still time to help out by booking a table at the upcoming charity night at the Narooma Golf Club as there are plenty of spaces available.

The former Narooma resident now works for the Spinal Muscular Atrophy Association of Australia in Canberra.

Proof of campaign’s success is her belief that Narooma and surrounds are now aware that SMA is the number 1 genetic killer of infants under the age of 2.

One in 35 of us carry the gene, and if two people carrying this gene together have a baby there is a one in four chance that the baby will suffer from SMA.

And 80 per cent of babies with SMA have Type 1, for which there is no cure and means they will not live to see their second birthday.

Babies born with Type 2 or 3, will need around the clock assistance for their whole lives and life expectancy will be reduced due to age of symptoms onset.

Awareness of SMA was given a boost in Canberra recently when Steve Doszpot, a local Liberal, gave a speech in the Legislative Assembly highlighting the effects of SMA on both children, and the families and friends who support them.

“He acknowledged the tragedy that had befallen my family when we lost Summer, earlier this year and he offered to help with any future fundraising activities and awareness programs that would be held in order to further spread an understanding of this killer disease throughout the community,” she said.

Click HERE or on the image below to read more…

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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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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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Family fights muscular disease in child’s memory

July 27, 2011

Family fights muscular disease in child’s memory

The OC Register | July 24, 2011 | By Fred Swegles

Since losing her 11-month-old daughter Hannah-Rose to spinal muscular atrophy in 2009, Jessica Prendiz of San Clemente is doing all she can to save other children from the same fate.

She and her family started Hope for SMA to raise awareness and funds to help find effective treatments and a cure. About 25,000 Americans have SMA, an inherited disease that causes muscles to lose function. The group says it is comparable to Lou Gehrig’s disease and cystic fibrosis.

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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A beautiful life: A rare genetic disorder is taking their little girl away, but Nathan and Christy Golden enjoy the moments they can

July 12, 2011

A beautiful life: A rare genetic disorder is taking their little girl away, but Nathan and Christy Golden enjoy the moments they can

High Point Enterprise | July 12, 2011 | By Jimmy Tomlin

HIGH POINT – From their living room, Nathan and Christy Golden can hear their daughter, 2½-year-old Callie, cackling joyously in another room.

Is she laughing at Elmo, the mirthful Muppet who always manages to tickle Callie’s funny bone? Or is she laughing at one of her three older brothers – Isaac, Ezra and Peter – who delight in making her laugh?

Truth is, for the Goldens, it doesn’t matter what Callie’s laughing at. She’s laughing.

Meanwhile, Christy’s crying. Not wailing, mind you – just tearing up as she talks about Callie, her precious little girl with the big smile on her face, the twinkling sparkle in her eyes, the infectious joy in her laugh, and the rare genetic disorder – spinal muscular atrophy, or SMA – that’s slowly taking her life.

“We went through a very dark time where, for me, I felt totally abandoned by God,” Christy tearfully recalls. “I felt like I just begged Him to let me take her place – that I would do anything just for her to be OK. … Our dreams for her were just crushed when we learned about her diagnosis. And our assumptions, too: That she would grow up. That she would play sports with her brothers. That one day she would get married and have children.”

Looking back, Christy sees that dark period as just another part of the journey – a time when she agonized over Callie’s bleak future, to the point that she neglected Callie’s present. Gradually, that realization changed Nathan and Christy’s perspective.

“When we see how happy Callie is now,” Christy says, “when we see her playing with her brothers and going to preschool, which she loves, it helps pull us out of the future – a future we cannot even know – and to really just be present with her and for her.”

Even as they watch Callie’s tiny body betray her, Nathan and Christy have determined their daughter will not be defined by how she dies but by how she lives.

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…

Leave a Comment » | Awareness, Fundraiser, Gwendolyn Strong Foundation, Inspiration, New York, United States | Tagged: , , , , | Permalink
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