Swimming with sharks part of doctor’s orders

March 1, 2011

Swimming with sharks part of doctor’s orders

Townsville Bulletin | March 1, 2011 | By Ryan Matheson

SHARING the water with more than five species of sharks isn’t about to stop brave youngster Byron Holman from enjoying one of his favourite pastimes.

The seven-year-old is set to come face-to-face with more than 50 sharks during a daring dive at Sea World on the Gold Coast as part of the Shark Bait Kids program tomorrow.

Young Byron has spinal muscular atrophy, a rare genetic condition which causes a weak respiratory system and progressive muscle degeneration.

The Oonoonba State School student is easily thrown off balance, restricting his ability to run freely like other kids his age.

He takes part in two hydrotherapy lessons each week providing muscle growth and respiratory benefits.

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Posted by stronwi

Stem cell study could aid motor neurone disease research

March 1, 2011

Stem cell study could aid motor neurone disease research

Physorg.com | March 1, 2011

Scientists have discovered a new way to generate human motor nerve cells in a development that will help research into motor neurone disease.

A team from the Universities of Edinburgh, Cambridge and Cardiff has created a range of motor neurons – nerves cells that send messages from the brain and spine to other parts of the body – from human embryonic stem cells in the laboratory.

It is the first time that researchers have been able to generate a variety of human motor neurons, which differ in their make-up and display properties depending on where they are located in the spinal cord.

The research, published in the journal Nature Communications, could help scientists better understand motor neurone disease. The process will enable scientists to create different types of motor neurons and study why some are more vulnerable to disease than others.

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Posted by stronwi

‘It’s not like I’m asking for anything new. I just need my medicine.’ Liability issue clouds access to medical pot

February 27, 2011

‘It’s not like I’m asking for anything new. I just need my medicine.’ Liability issue clouds access to medical pot

Sun Journal | February 26, 2011 | By Douglas Rooks

The medical marijuana law passed by voters in 2009 was supposed to create greater access to the drug for those suffering from a lengthy list of illnesses. It replaced a 1999 law, also enacted at referendum, that made it legal to possess marijuana as medicine but offered no system for patients to obtain it.

More than a year after the vote, and two months after the new registration system took effect, patients are still struggling to find doctors willing to write medical certificates, as is now required. And some patients are worse off than before.

One of them is Nicholas Stanley, 32, of Farmington, who was rendered quadriplegic by spinal muscular atrophy, a condition brought on by a congenital defect known as a tethered spinal cord. The problem manifested itself during high school, and Stanley has had three surgeries to correct it — but they only made the problem worse, he said recently.

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Posted by stronwi

Matt Brown will teach you how to smile

February 27, 2011

Matt Brown will teach you how to smile

The Times-Herald | February 26, 2011 | By Alex Mcrae

Matt Brown’s smile couldn’t be more permanent if it were tattooed on.

The broad, bold grin that splits his face never dims, never fades, never falters. It’s an expression that reflects a life of peace, happiness and joy. But it also causes some confusion.

Matt Brown can’t stop smiling. Most people in his situation would be drowning in tears.

Matt Brown has never kissed a girl, ridden a bicycle, thrown a baseball or walked a single step. Five years ago he even lost the ability to chew and swallow his own food and drink. Today, it’s all he can do just to breathe, talk and, of course, smile.

Click HERE or on the image below to read more…

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Posted by stronwi

Scrapbooking for a cause

February 26, 2011

Scrapbooking for a cause

The Evening Sun | February 26, 2011 | By Katharine Harmon

Five years ago, after her 6-month-old daughter died of spinal muscular atrophy, Brandy Baugher decided to hold a scrapbooking event in her daughter’s honor and to raise money for a good cause.

It was also a great opportunity to family and friends to come together and remember Emmy Rose who died on Dec. 27, 2006 of the No. 1 genetic killer of children under the age of 2.

“At first, I wasn’t sure if it would keep going,” Baugher said. “But it helped family and friends to talk about it, and know we were helping others.”

Money from the event, which is in its fifth year, goes to the Families of Spinal Muscular Atrophy in memory of Emmy. In five years, the event and donations in Emmy’s honor have reached $27,000, Baugher said.

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Leave a Comment » | FSMA, Fundraiser, Pennsylvania, Tribute, United States | Tagged: , , , , | Permalink
Posted by stronwi

Quest Diagnostics to Acquire Athena Diagnostics, Establishing Leading Position in Rapidly Growing Neurology Testing Market

February 25, 2011

Quest Diagnostics to Acquire Athena Diagnostics, Establishing Leading Position in Rapidly Growing Neurology Testing Market

Press Release | February 25, 2011

MADISON, N.J., Feb. 24, 2011 /PRNewswire via COMTEX/ — Quest Diagnostics Incorporated (NYSE: DGX), the world’s leading provider of diagnostic testing, information and services, announced today that it has signed a definitive agreement to acquire Athena Diagnostics, an esoteric laboratory specializing in genetic testing for neurological disorders, from Thermo Fisher Scientific (NYSE: TMO) for $740 million in cash.

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Posted by stronwi

Hundreds of children and adults will come together for Jacob’s Run, Walk & Roll to Cure SMA

February 25, 2011

Hundreds of children and adults will come together for Jacob’s Run, Walk & Roll to Cure SMA

Press Release | February 25, 2011

Sunday, March 6 at 9:30am hundreds of children and adults will come together at the South Country Regional Park in Boca Raton for Jacob’s Run, Walk & Roll to Cure SMA.  Boynton Beach residents Shaina and Adi Rappoport have served as the event organizers since 2002 when their son, Jacob, passed way from SMA (Spinal Muscular Atrophy) related complications.  Jacob was nine months old.

“We had never heard of SMA, but now we have pledged our lives to fighting this horrific disease” said Shaina. “We have chosen to do this to honor our son’s memory.”

Click HERE or on the image below to read more…

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Posted by stronwi

NIH Funding for Spinal Muscular Atrophy Research Up 60% Since 2008

February 23, 2011

NIH Funding for Spinal Muscular Atrophy Research Up 60% Since 2008

Press Release | February 23, 2011

The National Institutes of Health (NIH), the federal government’s medical research agency, released its most recent estimate of funding for disease categories which indicates that its base funding levels for SMA-related research has increased from $10 million in fiscal year 2008 to $16 million in fiscal year 2010.  An additional $3 million in one-time funding was provided to SMA-related projects in fiscal years 2009 and 2010, respectively, through the American Recovery and Reinvestment Act (ARRA).

Some of this  increase in federal resources devoted to SMA-related research is the result of the success of a two-pronged, long-term strategy of Families of SMA to provide seed funding for critical drug discovery programs in order to leverage federal (and private) resources, and to raise awareness of SMA and SMA-related research among federal policymakers through advocacy and grassroots efforts.

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Posted by stronwi

Gastric Bypass: 4 Months Later

February 22, 2011

Gastric Bypass: 4 Months Later

Keloland Television | February 22, 2011 | By Kelli Grant

SIOUX FALLS, SD – When diets fail, many turn to the weight loss surgery. And since nearly 16 percent of children in the U.S. are obese, more teens are looking into the option.

In November we took you into the operating room when an 18-year-old Sioux Falls high school student had gastric bypass surgery. The procedure is changing Kyla Snelling’s life every day.

As a toddler, doctors diagnosed Kyla Snelling with Spinal Muscular Atrophy, a disease that simply means her muscles become weaker to the point where they stop working.

It’s a disease she’ll die from, but losing weight can help prolong her life.
It’s why she was wheeled into the operating room last November for gastric bypass surgery. Four months later she’s dropped 40 pounds.

Click HERE or on the image below to read more…

2 Comments | Nutrition, South Dakota, United States | Tagged: , , | Permalink
Posted by stronwi

Disability no barrier to top scorers Low, Rifaat

February 21, 2011

Disability no barrier to top scorers Low, Rifaat

The Sun Daily | February 21, 2011 | By Shirlyn Preeta

KUALA LUMPUR (Feb 21, 2011): Being disabled was no barrier for success for Low Hong Ping and Mohd Rifaat Hussin, who were both top scorers in last year’s Sijil Tinggi Persekolahan Malaysia (STPM) examination.

Low, from SMK St John, Kuala Lumpur who suffers from spinal muscular atrophy, scored four As in the STPM examination.

“I studied two hours everyday consistently. Besides that, I always pay attention during all lessons in school,” said Low after the results were announced today.

Low added that he did not attend any tuition classes but his family, teachers and friends were always there to give him support and encouragement, which led to his success today.

“I am planning to further my studies in economics and be a successful economist one day,” added Low.

Click HERE or on the image below to read more…

2 Comments | Education, Inspiration, Malaysia | Tagged: , , | Permalink
Posted by stronwi

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