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Friday, August 6, 2010

MS News - from the National MS Society - explores: Ampyra, Tysabri, Stem Cell Research and ...


A new Feature Presentation:
 

A video webcast that explores:
  • Ampyra
  • Tysabri
  • Stem cell research
  • Reliable news sources
 
Click here to view the webcasts, or copy into your browser: http://www.nationalmssociety.org/multimedia-library/ms-learn-online/index.aspx
 
 
 
If you have a pop-up blocker, you will need to disable it prior to participating in a MS Learn Online webcast.

Thursday, August 5, 2010

CREATING PAIN Awareness Through Photography

THE MISSION OF INVISIBLE PROJECT 

The goal of the INvisible Project is to create chronic pain awareness through photographs of chronic pain survivors. Through visual images, the INvisible Project will show the determination and strength of those living with pain. One hundred percent of the proceeds from the INvisible Project will help those living with pain.


WHO: Recognizing that pain is a national healthcare crisis that must be addressed, CT Pain Foundation, a nonprofit organization founded in 2006 to promote healthy support groups and other positive enrichment programs for those living with pain, is planning its inaugural chronic pain awareness event entitled INvisible Project.




WHAT: INvisible Project showcases the day-to-day experiences of ten chronic pain survivors in a photo journalistic style. Following each person for one day, photographer Syd London captures and highlights the struggles, triumphs and resilient spirit of the ten pain survivors. In order to represent the pain community accurately, various chronic pain disorders such as Arthritis, Complex Regional Pain Syndrome, Diabetic Pain, Ehlers-Danlos Syndrome, Fibromyalgia, Juvenile Arthritis, Lupus, Multiple Sclerosis, and various other pain diseases will be featured.




WHEN / WHERE: The INvisible Project will have two events held during the month of October


  Visit the website for the Invisible Project


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Wednesday, August 4, 2010

A variant of a Gene named OAS1 may increase severity of multiple sclerosis symptoms

Written by Lori Friend of the Examiner.com
August 4, 2010




Gene; MSRC.Com
A gene named OAS1, oligoadenylate sythetase, was studied by researchers at St.Vincent's University Hospital in Dublin, Ireland and these researchers found that OAS1 may increase the severity of multiple sclerosis (MS) symtoms.
The OAS1 gene was screened in 401 people with MS, 394 people without MS and 178 people receiving the MS treatment beta interferon, a drug such as Rebrif or Avonex in shot form used to treat MS.
The researchers found 63 percent of people with MS had the AA genotype along with 57 percent of those who did not have MS.  Another genotype, called GG, was found in 37 percent of people with MS and 43 percent of people who didn't have it.
There wasn't much to show the gene being associated with getting MS, but this study showed those who had the AA genotype, the make-up of a cell, had earlier-in-the disease progression relapses and increased disease activity compared to those without the geneotype.  They also found people who had the GG genotype had less MS activity and relapses.
“It’s possible that the GG genotype may protect against increased disease activity in people with MS, but more research is needed,” said Margaret O'Brien, PhD, study author.
She goes on to say, "While we don’t understand why some patients vary so widely in their disease activity, this genetic association may give us clues to help direct future research.”
"In all honesty, I don't know what to make of this information," says Sarah Lewis of Lima, Ohio. "It gives me a headache sometimes trying to make heads or tails of all the information out there regarding this stuff I have in my head, but to not know would make me feel like I felt so many years ago when we used to hear nothing; and that was depressed thinking no one cared enough to try to heal us."

Source: Examiner.com

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Monday, August 2, 2010

Adult stem cell research far ahead of embryonic

NEW YORK — A few months ago, Dr. Thomas Einhorn was treating a patient with a broken ankle that wouldn't heal, even with multiple surgeries. So he sought help from the man's own body.
Einhorn drew bone marrow from the man's pelvic bone with a needle, condensed it to about four teaspoons of rich red liquid, and injected that into his ankle.
Four months later the ankle was healed. Einhorn, chairman of orthopedic surgery at Boston University Medical Center, credits "adult" stem cells in the marrow injection. He tried it because of published research from France.
Einhorn's experience isn't a rigorous study. But it's an example of many innovative therapies doctors are studying with adult stem cells. Those are stem cells typically taken from bone marrow and blood — not embryos.
For all the emotional debate that began about a decade ago on allowing the use of embryonic stem cells, it's adult stem cells that are in human testing today. An extensive review of stem cell projects and interviews with two dozen experts reveal a wide range of potential treatments.
Adult stem cells are being studied in people who suffer from multiple sclerosis, heart attacks and diabetes. Some early results suggest stem cells can help some patients avoid leg amputation. Recently, researchers reported that they restored vision to patients whose eyes were damaged by chemicals.
Apart from these efforts, transplants of adult stem cells have become a standard lifesaving therapy for perhaps hundreds of thousands of people with leukemia, lymphoma and other blood diseases.
"That's really one of the great success stories of stem cell biology that gives us all hope," says Dr. David Scadden of Harvard, who notes stem cells are also used to grow skin grafts.
"If we can recreate that success in other tissues, what can we possibly imagine for other people?"
That sort of promise has long been held out for embryonic stem cells, which were first isolated and grown in a lab dish in 1998. Controversy over their use surrounded the 2001 decision by former President George W. Bush to allow only restricted federal funding for studying them.
Proponents over the past decade have included former first lady Nancy Reagan and actors Michael J. Fox and the late Christopher Reeve. Opponents object that human embryos have to be destroyed to harvest the cells.
Embryonic cells may indeed be used someday to grow replacement tissue or therapeutic material for diseases like Parkinson's or diabetes. Just on Friday, a biotech company said it was going ahead with an initial safety study in spinal cord injury patients. Another is planning an initial study in eye disease patients later this year.
But in the near term, embryonic stem cells are more likely to pay off as lab tools, for learning about the roots of disease and screening potential drugs.
Observers say they're not surprised at the pace of progress.

Continue reading this Associated Press article


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MS patient goes to Mexico for stem cell transplant, chance to walk again

Disabled by MS, Dawn Gusty went to Mexico for the stem cell transplant she couldn't get here
BY CHRISTINA SANCHEZ • THE TENNESSEAN • AUGUST 1, 2010

Dawn Gusty lay face down on the floor, struggling like an infant to crawl to the next room.

Her brain knew what she wanted to do, but it couldn't tell her limp, heavy legs to perform the duty. The disease she had fought for 12 years was winning.
Defeated, she buried her face in the carpet and sobbed.
Dawn's multiple sclerosis had robbed her of mobility, first gradually, relegating her to a cane to steady her wobbly frame, and then more rapidly. Until four weeks ago.
That's when her husband pushed the wheelchair carrying her frail body into a clinic in Tijuana, Mexico, to get what the United States wouldn't give her: a stem cell transplant. Healthy cells from her bone marrow were replanted in areas of her body affected by her multiple sclerosis. The practice is illegal in the United States, except for research.
Twenty-four hours later, Dawn could stand for about a minute unassisted, and with help from a rolling walker, she could do knee bends. Unimaginable before.


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What, Me Worry? Stress and MS

August 2, 2010
Written by: Gali Hagel

What, me worry?  What do any of us have to be stressed about?  Give me a break.  And that goes for all of us—not just those of us with MS.   But, there are ways to deal with it constructively.



To say I’ve always been a worrier would be an understatement.  At the age of eight I stayed awake nights convinced that I’d developed leprosy since the bedroom light had been turned out (thank you, Ben Hur).  Since then my worrying has centered mostly on my health and the health of my family and friends.  This hasn’t been an idle, generalized concern.  It has bordered on the obsessive, the compulsive, the disordered.  Not surprisingly, the worry itself has taken a toll on my health.  I’ve also written about how my early home life caused me to become hypervigilant about any real or perceived threat.
I firmly believe this obsessive worry and hypervigilance, along with other factors I’ve touched on in a previous blog, contributed to the development of my MS.   My intuitive conviction is increasingly supported by research in the fields of psychoneuroimmunology and psychology, which largely recognize the connection between stress early on in life and “hyperresponse to stressors later in life” and the consequences of that lifetime dynamic. 


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Sunday, August 1, 2010

"Fly for MS" wants to Raise Global Awareness of Multiple Sclerosis

  



 Fly for MS is an unprecedented endeavor meant to raise global awareness for Multiple Sclerosis. In mid-August 2010 our team will embark in New York aboard a small plane for a 20,000 mile (32,000 km) trans-Atlantic, trans-European journey with stops in 30 countries over six weeks. During the voyage we will fly needy sufferers for treatment to distant MS hospitals, share the joy of flying with other people with MS, and fly MS specialists to financially-strapped MS hospitals.

The distance we will cover is almost enough to circle the globe, making the trip one of endurance for both man and machine. Fewer than 300 people have ever flown a small plane for such a distance on a single journey, versus 4,100 successful climbs on Mt. Everest.

Our Mission
 We will use the attention drawn by the boldness and record-making magnitude of our undertaking, which fascinates and fuels the imagination of people not previously familiar with MS, to inform them about the disease and the lives of those touched by it, their hopes and despairs, their challenges and unbelievable strength. Our target audience is the biggest ever for a single event: the 30 countries we will visit have a combined population of 1.2 billion and account for 1.4 million people with MS, 70% of the total worldwide.

Besides raising awareness, we will impact directly the lives of over 100 people with MS, and through them give hope and inspiration to most of those touched by MS. Additionally, in each country we will deliver a message with the key issues affecting the local MS community along with concrete suggestions for addressing them.

Our broader goal
 Finally, the entrepreneurial, spontaneous nature of our effort, conceived and implemented by a small multinational team, not by a large company of organization, should inspire others like us, showing them that they too can make a difference!  
Visit www.flyforms.org 


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