SMAHeadlines.com

Loan programs rescue patients

September 2, 2011

Loan programs rescue patients

stltoday.com | September 1, 2011 | BY CYNTHIA BILLHARTZ GREGORIAN

Some days, Ben Shaffer, 9, is so weak and tired he can barely walk into his fourth-grade classroom at Tillman Elementary School in Kirkwood.

“He was diagnosed with muscular dystrophy three years ago, but the doctors are not sure they have it right,” says his mother, Jennifer Shaffer.

Nevertheless, Ben’s doctor registered him with the Muscular Dystrophy Association, which lent him a wheelchair for days when walking is too hard.

Taylor Branson, 11, of Eureka, has spinal muscular atrophy type II, and is scheduled to have spinal fusion surgery in coming weeks, her mother, Julie Branson, said. When Taylor returns home, the Bransons will need a hospital bed and a hydraulic sling lift to move her between wheelchair and bed.
Not a problem, said the MDA. The group will have its people at United Seating & Mobility in Earth City collect the items from the MDA’s loan closet in Portage Des Sioux and deliver them to the Bransons for use as long as they need.

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Leave a Comment » | Adapted Equipment, Equipment, MDA, Missouri, United States | Tagged: adapted equipment, equipment, MDA, missouri, united states | Permalink
Posted by stronwi

Hoskins family continues fight for Zion

September 2, 2011

Hoskins family continues fight for Zion

Banner Graphic | September 1, 2011 | By Lauren Boucher

Chelsea and Paul Hoskins have watched their son, Zion, grow up knowing that he will never be able to walk or stand on his own. In the past year there have been several fundraisers in place to aid them in funding Zion’s medical bills.
The couple is reaching out to the community once again, asking for help as they try to raise money to equip their van so Zion can use a power chair instead of a manual one.

In May 2010 Zion was diagnosed with spinal muscular atrophy or SMA. Zion’s daily life now consists of being hooked up to a vest to help him breathe as well as a cough assisting machine, a suction machine, a pulse oximeter and breathing treatments. Each day Zion starts his half-hour treatments at 8:30 a.m. When speaking of Zion, Chelsea explained, “He will eventually get scoliosis and his back is already starting to curve so it hurts him a lot.”

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Leave a Comment » | Fundraiser, Indiana, United States | Tagged: fundraiser, indiana, united states | Permalink
Posted by stronwi

MDA: Young woman won’t let MD stop her or her dreams

September 2, 2011

MDA: Young woman won’t let MD stop her or her dreams

KSDK | August 31, 2011 | By Mike Bush

Vodpod videos no longer available.

Chesterfield, MO (KSDK) – For some people, moving day is every day.

Twenty-year-old Gabriela Garbero is on the move again. She’s heading back to the University of Missouri, excited about finally getting her own apartment.

“She’s very independent,” said Gabby’s mom, Kelley Garbero. “A lot more independent than people would give her credit for.”

She’s always been able to look ahead, which is even more impressive when you look back.

Gabriela was born with a neuromuscular disease called Spinal Muscular Atrophy. It was diagnosed when she was a baby after dozens of tests.

“It was two weeks of absolute torture,” said Kelley.

SMA affects the motor neurons of the spinal cord and brain stem, causing muscle weakness. The family says, the Muscular Dystrophy Association was their shoulder to lean on.

“From the very beginning, they were a source of great support,” explained Kelley.

MDA’s message was the only difference between Gabriela and someone else, is that she would need a wheelchair to get around. And the Garbero’s weren’t ones for pity parties. They passed that message on to their daughter.

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Leave a Comment » | Inspiration, MDA, Missouri, United States | Tagged: inspiration, MDA, missouri, united states | Permalink
Posted by stronwi

From skin cells to motor neurons

August 28, 2011

From skin cells to motor neurons

Harvard Gazette | August 26, 2011

A team of Harvard stem cell researchers has succeeded in reprogramming adult mouse skin cells directly into the type of motor neurons damaged in amyotrophic lateral sclerosis (ALS), best known as Lou Gehrig’s disease, and spinal muscular atrophy (SMA). These new cells, which researchers are calling induced motor neurons (iMNs), can be used to study the development of the paralyzing diseases and to develop treatments for them.

Producing motor neurons this way is much less labor intensive than having to go through the process of creating induced pluripotent stem cells (iPSC, iPS cells), and is so much faster than the iPS method that it potentially could reduce by a year the time it eventually takes to produce treatments for ALS and SMA, said Kevin Eggan, leader of the Harvard team.

Importantly, the direct reprograming does not involve the use of any factors known to trigger cancer or any other disease states, and the factors in fact make the fibroblasts, the connective tissue cells that make and secrete collagen proteins, stop dividing.

The work by Eggan, a member of the Harvard Stem Cell Institute principal faculty and an associate professor in Harvard’s Department of Stem Cell and Regenerative Biology (SCRB), and his colleagues builds on and advances work by SCRB co-chair and Professor Doug Melton, who pioneered direct cellular reprogramming, and Marius Wernig of Stanford, who used direct reprogramming to produce generalized neurons.

In a paper given “Immediate Early Publication” online by Cell Stem Cell, the Eggan team reports that the cells they are calling iMNs appear to be fully functional. “One of the most important things we’ve done is show that when you put them into the embryo they function normally like motor neurons,” Eggan said in an interview. “They move to the right place and function on their own.”

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Leave a Comment » | Massachusetts, Research, United States | Tagged: massachusetts, research, united states | Permalink
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The end of ‘Special Sarah’

August 28, 2011

The end of ‘Special Sarah’

STLToday.com | August 28, 2011 | By Todd Frankel

KIRKWOOD • This is not that story, the one about how inspiring Sarah Schwegel is. It’s important you know that from the start.

Yes, Sarah graduated from high school in May, on time and with a 3.6 GPA. She starts college on Monday. And she has a form of muscular dystrophy. She uses a power wheelchair to get around. She needs help with everyday tasks. In fact, if you look up the definition of her particular disease on the Muscular Dystrophy Association’s website, you’ll find a picture of Sarah — literally, a photo of her smiling in her wheelchair.

So it’s tempting to think of her in a particular way. Sarah knows this.

Chances are you have read about her, seen her on TV. She was the national MDA goodwill ambassador when she was 8 years old. She played a starring role on the MDA telethon and joked around with Jerry Lewis. She was on the cover of Parade magazine. She threw out the first pitch at a Cardinals game. She still makes public appearances and volunteers. She knows the routine. Sarah even approached this article with the suspicion it would paint her in those familiar tones.

But Sarah wants to shed the expectation that she’s a poster child for anything other than her own life. It’s time. She wants to leave Special Sarah behind.

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Leave a Comment » | Inspiration, Missouri, United States | Tagged: inspiration, missouri, united states | Permalink
Posted by stronwi

Matt Arnold, an ‘inspiration’ for people with disabilities, passes away

August 24, 2011

Matt Arnold, an ‘inspiration’ for people with disabilities, passes away

Bay City Times | August 23, 2011 | By Zachary Reichard

BAY CITY — After a battle with liver failure and pneumonia, disability advocate and member of New Dimensions staff Matt Arnold has passed away at 52.

Arnold, a Bay City native, suffered from Spinal Muscular Atrophy, a form of Muscular Dystrophy, which confined him to a wheelchair at a young age.

“He was absolutely wonderful,” New Dimensions’ executive director Patsy Powell said. “He was an inspiration to everyone who worked here.”

Arnold, who was featured in a Bay City Times story in 2008, never let the challenges he faced bring him down, his mother Patricia said.

“His handicap never held him back at all, he would just go go go all the time,” Patricia said. “Nothing stopped him, he fought everyday.”

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Leave a Comment » | Michigan, Tribute, United States | Tagged: michigan, tribute, united states | Permalink
Posted by stronwi

Pedal-powered tribute

August 23, 2011

Pedal-powered tribute

ThisIsWiltshire.co.uk | August 20, 2011 | By Will Frampton

A WESTBURY couple are holding a fundraising day at Westbury Town Football Club in memory of their baby Maisie, who died last year.

Dad Jim Pickernell, 30, has played with the reserves for the club, where his father-in-law is chairman, for five years, and thought it would be the perfect venue for a children’s bike and trike challenge.

The couple, of Timor Road, are hoping to raise as much as possible for the Children’s Intensive Care Unit at Bristol Children’s Hospital, where Maisie was cared for.

Maisie died last May aged just nine weeks and four days, after suffering from spinal muscular atrophy, a genetic condition which is most severe in babies. The event, on September 4, will raise money through sponsorship as youngsters aim to complete five full laps of the pitch.

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Leave a Comment » | Fundraiser, Tribute, United Kingdom | Tagged: fundraiser, tribute, united kingdom | Permalink
Posted by stronwi

Representative Pete Olson makes a muscle and a difference for MDA

August 23, 2011

Representative Pete Olson makes a muscle and a difference for MDA

Fort Bend Star | August 10, 2011

On Wed., Aug. 10, Representative Pete Olson (R – Sugar Land) and Deputy District Director Robert Quarles met with several representatives of the Muscular Dystrophy Association (MDA) as part of MDA’s Fly Out to discuss Transitions Services and the obstacles faced by adults living with pediatric diseases. Each year in the United States, nearly half a million youth with disabilities and chronic health conditions cross into adulthood — and the numbers continue to grow. However, barriers continue to exist for young people seeking higher education, employment and independent living.

Tomas Diaz, a 22-year-old living with Spinal Muscular Atrophy (SMA) Type II and former MDA Goodwill Ambassador, spoke with Representative Olson about middle-class young adults who don’t have the financial resources to support themselves and who also don’t qualify for government assistance.

“The greatest need in our quest for independence is finding qualified live-in attendants to help with everyday necessities,” said Diaz, who is also pursuing a master’s degree at St. Thomas University in Houston. “What if there is an emergency at my house and I can’t get out of bed? Unfortunately, private insurance and the Department of Aging will not cover the cost of an attendant living in a patient’s home.”

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Leave a Comment » | Advocacy, MDA, Texas, United States | Tagged: advocacy, MDA, Texas, united states | Permalink
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McNeeley Foundation’s goal is to help children

August 23, 2011

McNeeley Foundation’s goal is to help children

The Payson Roundup | August 19, 2011 | By Max Foster

What began seven years ago as a small-town, grass roots effort to earn $8,000-plus to buy a motorized wheelchair, called a Go-Bot, for a 5-year-old Pine boy who suffered from spinal muscular atrophy, has blossomed into a charity that has earned and donated more than $40,000 to pay medical expenses for needy Rim Country children.

The Justice McNeeley Foundation, which is run entirely by unpaid volunteers, has a motto of “Help Us Help a Child” and helping is what the organization does best.

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Leave a Comment » | Arizona, Fundraiser, United States | Tagged: arizona, fundraiser, united states | Permalink
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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.

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