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運動失調症(小腦萎縮症)
Local Teen Headed to China for Stem Cell Treatment 列印 E-mail
運動失調症(小腦萎縮症)
週二, 02 六月 2009 12:23
There are no translations available.

Source: NTV

 

A local teen battling a genetic disorder will embark half-way around the world Saturday
for stem cell treatment. Why? Because it's not allowed in the U.S. 
 

 

Seventeen-year-old Nate Redman of Grand Island looked closely at the picture album his sister made him Friday afternoon. Seventeen years of memories, including wrestling and marching band, have slowly faded from his sight.

 

"I can't read music and my balance made it hard to march. I love wrestling, I've been doing it since I was six-years-old, but I just couldn't do it anymore," he said.

 

What was diagnosed in eighth grade as Stargardt's disease--a form of vision loss--was rediagnosed three weeks ago at Children's Hospital and Medical Center in Omaha as Spinocerebellar Ataxia Type 7.  Nate started noticing loss of coordination and speech about a year ago.

 

"My balance, speech, vision is all connected," he said.

 

President Barack Obama lifted an embryonic stem cell research ban in America back in March, but the country is still far behind what China is doing: treating specific genetic diseases with adult stem cells.

 

Redman's treatment will use adult stem cells, from an infant's umbilical cord. 

 

"They take and culture the cells, grow them, and then inject them. In Nate's case, they'll go into his spinal column," his dad, Doug, said.

 

This isn't a cure for the Grand Island Northwest soon-to-be senior, but it's a start. 

 

His mom started a blog to detail this rare, genetic disease, which is similiar to MS, except that it's neurological. MS is considered an autoimmune disease. The only treatment available for SCA Type 7 uses adult stem cells. While not as controversial as embryonic stem cells, treatment is still banned by the FDA.

 

"The FDA treats stem cells like a drug," Doug Redman said.

 

Stem cell treatment can't be approved until on-going trials are successful, which Redman said could take another five to ten years.

 

"With this type of condition, we don't have that much time to spare," he said of the progressive disease.

 

China, however, allows treatments now. 

 

"Obviously, the big thing is that we slow the progression down until we have options in the
U.S.," he said.

 

So, Nate and his mom are off on a five-week trip to China.  Six stem cell injections into his spinal column will be followed by speech and balance therapy.

 

"That it could just keep getting worse is kind of a big deal for me, but the fact that I have
hope it might get better is really promising," Nate said.

 

Reporter's Notes: Stacia Kalinoski

 

Doug Redman said there's a 75 percent chance Nate will see some improvements, but he'll likely have to go back to China every year for more treatment. Since the procedure is out of the country and not FDA-approved, insurance will not cover it. Doug said they're using Nate's college funds to pay for it.

 

Nate is thinking ahead to attending a community college after high school, but he and his dad say it all depends on how the treatments work.  Right now, he uses brail to get by in school and cannot drive.

 

For updates on his progress, check out his family blog:

www.stemcellschina.com/blog/nateredman.

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Wife to Do Bungee Jump to Raise Money for Husband’s Bone Marrow Transplant 列印 E-mail
運動失調症(小腦萎縮症)
週五, 19 九月 2008 18:00
There are no translations available.


Source: Campbel Town Courier

This Sunday sees two Campbeltown girls bungee jump 160 feet to help one of their husbands go back to China for life-changing treatment.

Karen Blair and her friend Claire Little will be doing the jump to raise money for Karen’s husband David to receive a bone marrow transplant with stem cells.

David has a rare condition called cerebella ataxia that affects the brain, nervous system and also balance and co-ordination.

He was diagnosed with the condition in 2000 although it had been known that it was a hereditary disease within his family.

David has in the past lost his grandfather, father and aunt to the rare disease.

In 2006 David began fundraising so that he could go to China and in February 2007 he raised enough money to undergo five stem cell injections.

As well as the bungee jump, a friend of Karen’s who now stays in Dumfries, Karen Robertson, will be holding a sponsored swim, covering a distance equivalent to crossing the English Channel - over 1,400 lengths of a 50-metre pool.

Karen Blair said: ‘Since being home from his injections and physiotherapy in 2007 he has just in the last three months worsened and has started to lose his balance.

‘His spirit is still there although some days he is really down in the dumps as he will not venture out of the house unless absolutely necessary as he is scared in case he falls.

‘David asked me a few weeks ago if I would take him back to China for more treatment so again I have started fundraising.

‘This time he will have a bone marrow transplant with stem cells. This should be a lot more effective.’

‘If anyone would like to help fundraise or sponsor myself or Claire they can contact me or they can get Claire in the Commercial Bar.’
 
Family Rallies Behind Father 列印 E-mail
運動失調症(小腦萎縮症)
週四, 28 八月 2008 08:47
There are no translations available.


Source: Star News Group

By Shaun Inguanzo

THE FAMILY of a Keysborough man who is battling a rare brain disease is urging the community to dig deep – while having fun – and take part in a fundraising festival that will help pay for expensive stem cell treatment.

Raymond Bell, 65, has been diagnosed with cerebellar ataxia, a form of gross muscle incoordination that could see the once-active Keysborough resident wheelchair bound within years if left untreated.

His son Gavin Bell, a professional caricaturist, and daughter Sharon, a landscape designer, in conjunction with Australian doctors have identified that stem cell treatment in China could help Mr Bell maintain his mobility and quality of life.

But that treatment will cost a whopping $30,000.

To raise funds, the family is running a Father’s Day ‘Fun-Raiser’ event at Garden World in Springvale on Sunday 31 August.

Families can visit Garden World, have their caricature drawn by Gavin, enter a raffle, and enjoy live entertainment, while also indulging in a sausage sizzle to be organised by the Springvale Lions Club.

Ms Bell, 38, said her dad had been a big community contributor and family man, having built a garden at the kids' Keysborough school and been involved with the Dandenong Swimming Club.

She said it was time that the family gave him something in return for his support.

“He is such a young man,” Ms Bell said.

“He’s not long retired and it’s such a shame to see such an active man become debilitated.

“Dad has been a great dad and grandfather.”

Ms Bell said the stem cell treatment would come from umbilical cord stem cells – not the controversial embryonic form – and the treatment had helped a female sufferer who lives in Wangaratta.

“She had a fairly similar diagnosis to dad, and the treatment has given her a much better quality of life,” she said.

“They’re all individual, as with any procedure, but stem cell treatment has produced some amazing things from people.”

To help the Bell family visit the Bell Fun-Raiser at Garden World Springvale located at 810 Springvale Road.

“They make great Father’s Day gifts at Garden World,” Ms Bell said.

“All the proceeds from the barbecue, Father's Day raffle we’ll be running, and the caricature drawings will go towards dad's treatment.”
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China Treatment Offers Hope for Eagleville Native 列印 E-mail
運動失調症(小腦萎縮症)
週三, 16 七月 2008 08:47
There are no translations available.


Source: Bethany Clipper

A trip to a Chinese medical clinic offers hope for a normal life for Eagleville native Tyson McLain.

McLain, who turns 26 this month, was diagnosed in 2003 with a debilitating condition called Friedreich’s Ataxia (FA).

Tyson’s family and friends from North Harrison High School will be holding a Battle of the Bands on Saturday afternoon to raise funds to send the Eagleville native to China for treatment of the genetic condition that afflicts only one in 50,000 people.

McLain, who now lives in Kansas City, said Chinese doctors offer the only treatment that has been shown to markedly improve the disorder. The doctors offer umbilical stem cell injections to patients suffering with FA.

“I was never very athletic,” said McClain, a 2000 graduate at North Harrison. But he noticed years ago a loss of coordination that has gotten worse over time.

“For some reason, its onset is different for different people,” he said.

According to the National Institute of Neurological Disorders and Stroke, Friedreich’s ataxia is an inherited condition that causes progressive damage to the nervous system. The disease often results in the deterioration of nerve tissue in the spinal cord and the nerves controlling muscle movement of the arms and legs.

After graduating from North Harrison, Tyson attended Park University in Parkville, Mo., where he had a radio show on the campus station. He currently works from home as a customer service agent for Accept Marketing, a contractor for Sprint.

Since the diagnosis of his condition, McClain has contacted a young woman who recently underwent treatment in China.

“She showed significant improvement,” McLain said.

The Battle of the Bands will start at 3 p.m. on Saturday, July 19, at the Bethany fairgrounds. Some six bands have signed up for the event so far, according to sponsors.
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