Research suggests new cause to blame for spinal muscular atrophy
Medicalxpress.com | June 21, 2012
Over 15 years ago, researchers linked a defect in a gene called survival motor neuron — or SMN — with the fatal disease spinal muscular atrophy. Because SMN had a role in assembling the intracellular machinery that processes genetic material, it was assumed that faulty processing was to blame.
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Ski-a-thon celebrates Mitchell’s life
The Daily Advance | October 8, 2011 | By Toby Tate
EURE — This year’s Haley Mitchell Ski-a-thon for Spinal Muscular Atrophy (SMA) is significant not only in the fact that it’s the last one, but also because it would have been Haley’s 14th birthday.
“It’s tough to be here this year without Haley,” said Valerie Mitchell, Haley’s mother. “Personally I just don’t have it in me to keep doing this big event.”
SMA is a deadly neuromuscular disease that deteriorates the spinal cord cells that control muscular function. Afflicted with SMA since birth, Haley was given only two years to live. She beat the odds, passing away on Oct. 26, 2010, just 2½ weeks after her 13th birthday.
Haley’s father Jeff Mitchell, who was waterskiing at Saturday’s event at Beaver Lake in Gates County, said he was happy with the turnout and the support they have received over the years. To date, the ski-a-thon has raised about $400,000 for Families of SMA, according to Mitchell.
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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
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.
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PokerNews Interview: Josh Cranfill
PokerNews.com | April 29, 2011 | By Rich Ryan
At 14 months old, Josh Cranfill was diagnosed with Werdnig-Hoffman Disease – a form of Spinal Muscular Atrophy. It is a degenerative muscle disease that weakens the muscles in the body until they eventual die out. Poker is unquestionably Cranfill’s favorite hobby, but since the United States Department of Justice shut down online poker in the United States, it’s become extremely difficult for him to play.
Cranfill is confined to an electric wheelchair, limiting his mobility, and lives in Burlington, North Carolina, which is a long way from any brick-and-mortar casino. He can play in home games, but the houses or buildings must be handicap accessible and he needs an assistant to get him there and help him play.
We were fortunate enough to catch up with Cranfill and talk to him about the current state of online poker and how it effects the handicapped community.
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This gang is ready to Walk and Roll
The Charlotte Observer | March 31, 2011 | By Jessica Milicevic
Michael Gray Dougherty, known to friends and family as Gray, is a happy, independent 12-year-old boy.
He likes to play chess and Xbox, and he competes on the National Academic League team at Alexander Graham Middle School. He lives in Sharon Woods with his mom, Abbie, dad, Mike, and 8-year-old brother, Riley.
Gray also has a rare muscular disease: Spinal Muscular Atrophy. Diagnosed when he was 10 months old, Gray has limited voluntary muscle movement and has been in a power wheelchair since he was 2. Every five years, Gray graduates to a new wheelchair to fit his changing needs and size.
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Fans to choose paint scheme for NASCAR Goody’s 500
Examiner.com | March 13, 2011 | By Greg Engle
Many NASCAR sponsors find innovative ways to highlight their brands. One of NASCAR’s oldest sponsors has found a way to not only highlight their brands, but two important charities as well.
Goody’s has been around NASCAR for decades and been the presenting sponsor of the spring race at Martinsville for several years. This year has part of their campaign leading up to the race on April 3, Goody’s is launching a contest that will highlight both the Wounded Warrior Foundation and the Victory Junction Gang Camp.
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This gang is ready to Walk and Roll
The Charlotte Observer | March 9, 2011 | By Jessica Millicevic
Michael Gray Dougherty, known to friends and family as Gray, is a happy, independent 12-year-old boy.
He likes to play chess and Xbox, and he competes on the National Academic League team at Alexander Graham Middle School. He lives in Sharon Woods with his mom, Abbie, dad, Mike, and 8-year-old brother, Riley.
Gray also has a rare muscular disease: Spinal Muscular Atrophy. Diagnosed when he was 10 months old, Gray has limited voluntary muscle movement and has been in a power wheelchair since he was 2. Every five years, Gray graduates to a new wheelchair to fit his changing needs and size.
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Friends coping with tragedy
The Andrews Journal | February 2, 2011 | By Pat Love
President Dwight Eisenhower once said, “There is no tragedy in life like the death of a child. Things can never get back to the way they were.”
Jennifer O’Dell of Andrews has joined the special sorority of those who can attest to the truth of that statement. Her youngest daughter, Kelsey, died before her first birthday from the genetic disorder spinal muscular atrophy.
O’Dell was told about the monthly meetings of Compassionate Friends, a self-help group that gives surviving parents and siblings an opportunity to come together for friendship and healing. She at first choose not to attend monthly meetings since she was not comfortable talking about her loss to a large group and was angry with everyone, including God.
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SMAHeadlines.com 