Eston writer’s second novel based on childhood

April 21, 2011

Eston writer’s second novel based on childhood

Evening Gazette | April 20, 2011 | By Dave Robson

AN AUTHOR has drawn on his own experiences of growing up in the 1970s to pen his second novel.

Children of the Resolution, by Eston writer Gary William Murning, explores, within the context of a unique coming-of-age story, the development of integrated education for children with disabilities.

And that’s something Gary knows plenty about for, having been born in Guisborough in 1966 with a form of spinal muscular atrophy, he spent some of his early years at schools for children with physical disabilities before going into mainstream education.

Click HERE or on the image below to read more…

Leave a Comment » | Advocacy, Inspiration, United Kingdom | Tagged: , , | Permalink
Posted by stronwi

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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Posted by stronwi

A Dog, a Wheelchair and a Story of Dedication and Redemption

April 19, 2011

A Dog, a Wheelchair and a Story of Dedication and Redemption

ScarsdalePatch | April 18, 2011 | By Marisa Iallonardo

A black lab named Lex not only came to John Clark’s rescue physically, but also helped him triumph creatively.

“On either side of the driveway out there, we’ve got shag bark hickory trees. If you’re a baseball player or you know baseball players, hickory is a hard wood, and that’s what they make baseball bats out of. Well, those nuts are very hard. There was a nut lodged between two of the flagstones in the walkway, and I didn’t see it,” said Clark, a Scarsdale resident who was diagnosed with progressive spinal muscular atrophy, type 3, and is in a wheelchair.

“So I ran over it, and it should have split,” Clark said. “It should have smashed and there should have been no more to say about it. But it didn’t, and it sent me into an uncontrolled spin where I would up wedged against the stucco wall, hanging out of the wheelchair with three right wheels off the ground. I’m hanging there over the precipice of this driveway, and [Lex] went into action without being told.”

The dog moved from the right to left sides of the chair, pushing it until it was straight, according to Clark.

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1 Comment | Inspiration, New York, United States | Tagged: , , | Permalink
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Hit-and-run victim seeks help; police work to find suspect

April 18, 2011

Hit-and-run victim seeks help; police work to find suspect

lohud.com | April 17, 2011 | By James O’Rourke

HILLCREST — Born with spinal muscular atrophy, Cynthia Gershanow had already become accustomed to life in a wheelchair. But since a hit-and-run driver stripped her of even her limited mobility, she has been forced to cope with a new lifestyle — one confined to a bed.

Nearly six months later, she’s still recovering from her injuries and hoping that police will be able to solve the case and make an arrest.

Gershanow was returning from the grocery store Oct. 28 when she attempted to enter the Eckerson Village apartment complex, her home since 1991, about 7:30 p.m.

It took only a moment. A car police believe may have been speeding hit her, catapulting both Gershanow and her motorized wheelchair across East Eckerson Road. The driver kept on without even stopping to see what had happened.

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Chilliwack group hopes to raise spinal muscular atrophy awareness

April 17, 2011

Chilliwack group hopes to raise spinal muscular atrophy awareness

Chilliwack Progress | April 15, 2011 | By Katie Bartel

Spinal muscular atrophy is the number one genetic killer for babies, and yet there is no cure or treatment.

In fact, when children under the age of two are diagnosed, their parents are often told to take them home and love them for as long as they have them.

That’s not good enough for a group, now based in Chilliwack, fighting for both treatment and cure.

Families of SMA Canada, which were previously based in Manitoba, moved to Chilliwack when Susi Vander Wyk, a longtime board member, took on the non-profit organization’s presidency role.

Vander Wyk, whose 14-year-old daughter has SMA, is determined to increase the organization’s support for children, parents and families with SMA.

Click HERE or on the image below to read more…

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Spinal Muscular Atrophy: A Timely Review

April 16, 2011

Spinal Muscular Atrophy: A Timely Review

Archives of Neurology | April 11, 2011 | By Stephen J. Kolb, MD, PhD; John T. Kissel, MD

ABSTRACT

Spinal muscular atrophy (SMA) is a neurodegenerative disease characterized by loss of motor neurons in the anterior horn of the spinal cord and resultant weakness. The most common form of SMA, accounting for 95% of cases, is autosomal recessive proximal SMA associated with mutations in the survival of motor neurons (SMN1) gene. Relentless progress during the past 15 years in the understanding of the molecular genetics and pathophysiology of SMA has resulted in a unique opportunity for rational, effective therapeutic trials. The goal of SMA therapy is to increase the expression levels of the SMN protein in the correct cells at the right time. With this target in sight, investigators can now effectively screen potential therapies in vitro, test them in accurate, reliable animal models, move promising agents forward to clinical trials, and accurately diagnose patients at an early or presymptomatic stage of disease. A major challenge for the SMA community will be to prioritize and develop the most promising therapies in an efficient, timely, and safe manner with the guidance of the appropriate regulatory agencies. This review will take a historical perspective to highlight important milestones on the road to developing effective therapies for SMA.

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1 Comment | Research, United States | Tagged: , | Permalink
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Trophos Presents Data At The American Academy Of Neurology On SMA And MS

April 15, 2011

Trophos Presents Data At The American Academy Of Neurology On SMA And MS

Medical News Today | April 14, 2011

Trophos SA, a clinical stage pharmaceutical company developing innovative therapeutics from discovery to clinical validation for indications with under-served needs in neurology and cardiology, announces today that Trophos has described the design of its pivotal clinical study of olesoxime in spinal muscular atrophy (SMA) via a poster presentation at this week’s 6th Annual American Academy of Neurology (AAN) meeting held in Honolulu, Hawaii, US, April 9 to 16, 2011. In addition at the conference, Trophos also delivered an oral presentation detailing Trophos’ novel approach in multiple sclerosis (MS). Both the paper and oral presentation were delivered at the conference on April 14.

The poster, on the pivotal efficacy study of olesoxime in the rare, neurodegenerative condition, SMA, demonstrates how the challenges of designing a robust study in an indication where there is no precedent were met by bringing together and working with key opinion leaders, patient and physician networks and regulators. The study commenced in October 2010 (see release of October 15 2010) and is currently recruiting patients. Efficacy results are expected in the second half of 2013. The study is substantially funded by Trophos’ partnership with the Association Française contre les Myopathies (AFM) (see release of 19 March 2009) and the trial protocol has benefited from the EMA Protocol Advice procedure.

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1 Comment | France, Research | Tagged: , | Permalink
Posted by stronwi

Steve Mikita’s not surviving — he’s living

April 15, 2011

Steve Mikita’s not surviving — he’s living

Deseret News | April 14, 2011 | By Lee Benson

I don’t care what you’re up against, what your challenges are, climbing Everest, swimming the Channel, fighting the high cost of living, every day facing a new ache and pain.

On the degree of difficulty scale, you will never approach Steve Mikita.

Steve has a degenerative neurological disorder called spinal muscular atrophy, which he was born with. His life has been one long parade of losing things: the ability to use his hands, feed himself, hold his head straight, wipe his nose, move.

Although no one keeps track of such things, at 55 he’s believed to be the oldest person ever living with SMA.

Living being the operative word.

Click HERE or on the image below to read more…

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Her little pony : Miniature horse provides a spark in the life of a terminally ill child

April 14, 2011

Her little pony : Miniature horse provides a spark in the life of a terminally ill child

Santa Barbara News-Press | April 13, 2011 | By Karna Hughes

Horses have always held a special place in the hearts of little girls. Maybe it’s the way their manes hang down — kids can’t help wanting to run their fingers through them. Or maybe it’s how powerful the animals are, the way they seem like they can vanquish anything as they gallop around.

The family of Gwendolyn Strong, 3, may never know exactly why she loves horses, because her mouth can’t form the words to tell them.

Diagnosed at 6 months old with type I spinal muscular atrophy, she has to wear a respirator to help her breathe because the muscles around her lungs have atrophied.

But it’s clear how much Gwendolyn is thrilled by ponies in the way her big blue eyes light up when she sees one. The sight of a horse will also cause her to make what her mom, Victoria, calls her “happy sound” — guh, guh, guh!”

Cognitively, she’s just the same (as other 3-year-olds) but the disease is degenerative, so as time goes on, she’s more and more impacted,” said Mrs. Strong, 34, a Santa Barbara resident.

Spinal muscular atrophy, which affects nearly one in every 6,000 babies, causes wasting in every muscle in the body and has no cure. It’s a terminal disease; most children who have type I die at 2 years old.

Gwendolyn can’t sit, stand, walk, eat or breathe without assistance. So she’s supported by a battery of machines, including a feeding tube, a suction device that helps her swallow, and heart-rate and oxygen monitors.

Click HERE or on the image below to download the story and read more…

1 Comment | Awareness, California, Gwendolyn Strong Foundation, United States | Tagged: , , , | Permalink
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Notice of Intent to Publish a Request for Applications for a Spinal Muscular Atrophy (SMA) Biomarker Study (U01) and Convene a Related Workshop

April 13, 2011

Notice of Intent to Publish a Request for Applications for a Spinal Muscular Atrophy (SMA) Biomarker Study (U01) and Convene a Related Workshop

NINDS | April 8, 2011

The National Institute of Neurological Disorders and Stroke (NINDS) intends to promote a new initiative by publishing a Funding Opportunity Announcement (FOA) to solicit applications for clinical research studies that will accelerate and augment the validation of biomarkers for Spinal Muscular Atrophy (SMA).

This Notice is being provided to allow potential applicants sufficient time to develop responsive protocols and necessary collaborations.

The FOA is expected to be published in the NIH Guide for Grants and Contracts in late spring/early summer of 2011, with an anticipated receipt date in late summer of 2011.

The FOA will use the U01 cooperative agreement mechanism. Details of the planned FOA are provided below.

Click HERE or on the image below to read more…

Leave a Comment » | Research, United States | Tagged: , | Permalink
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