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Saturday, April 13, 2013

Up to 10,000 kids under 18 are believed to have MS! - Now, there is a Pediatric MS line of Cooling Vests


 Kids and teens with MS? "Up to 10,000 kids under 18 are believed to have MS!” One child with MS is one too many and as someone diagnosed with MS myself as an adult, it saddens me that MS itself and heat sensitivity can also be so life altering for an active child or teen. 

I, as Polar Product’ MS Consultant, and Polar are committed along with the NMSS, doctors, nurses, non-profits, volunteers and parents groups to improving the lives of kids with MS. For our contribution Polar Products has developed two cooling product lines designed specifically for kids and teens.  With the right body cooling products, kids with MS don’t have to miss out on the fun! Enjoying life outside even during the hot months, playing with their friends, participating or watching sporting events, or just enjoying being a kid is all possible. 

And…as we know, being a teen can be tough, peer pressure, wanting to fit in comes with the age.  Our teen line addresses those very real concerns while still providing safe, comfortable cooling...very discreetly.

To see these vests, click here. Mention that you saw the information for the pediatric Cooling vests from Stu's Views and MS News/ MS Views & News


written by: 


Jil Deabler
Account Executive
Polar Products, Inc.
3380 Cavalier Tr. Stow OH 44224
ph: 1.800.763.8423
fax: 330.253.4233

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Thursday, April 11, 2013

Complementary & Alternative Medicine with Multiple Sclerosis (MS) - CAMS, Nutrition, Exercise, Stress Management, plus more....


April 2013
Complementary and alternative medicine (CAM) includes a variety of interventions—from exercise and dietary supplements to stress management strategies, biofeedback, and acupuncture. These therapies—which come from many different disciplines and traditions—are generally considered to be outside the realm of conventional medicine. When used in combination with conventional medicine, they are referred to as “complementary;” when used instead of conventional medicine, they are referred to as “alternative.”
In the United States today, approximately 75% of people with MS use one form or another of CAM, generally in combination with their prescribed MS treatments. For more information about complementary and alternative medicine, please watch these two short videos. Part 1 Part 2

Are CAM Therapies Safe to Use?

Many people use CAM because they believe that anything sold over-the-counter at a pharmacy or health food store is healthy and harmless. However, unlike conventional medical treatments—which are thoroughly tested and carefully regulated by the U.S. Food and Drug Administration—most CAM therapies have undergone very little, if any, scientific study. So some may be completely safe while others may actually pose significant risks—for example, by producing serious side effects or interacting negatively with other medications a person is taking.
Fortunately, a greater effort is now being made to find ways to evaluate the safety and effectiveness of various types of CAM.

Why are Controlled Clinical Studies So Important?   

Carefully-designed clinical trials are the best way to determine whether a treatment is safe and effective. Here are the reasons why:
  • Because the course of MS is variable, and each person’s symptoms tend to come and go in an unpredictable way, the only way to determine the effectiveness of a treatment is to test it on a large number of people.
  • Because most people—regardless of the disease they have—will have a positive response to any new treatment they receive (even if it’s an inactive substance or placebo), the effectiveness of a new treatment can only be proven by comparing it to a placebo or to another treatment that has already been shown to be effective.
  • Because every treatment carries with it the risk of anticipated and unanticipated side effects, the only way to evaluate a treatment’s safety is to evaluate it in a large number of people over a sufficient period of time.

Recommended Guidelines to Follow

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Multiple Sclerosis Treatments - for the Disease and for the Symptoms can enable better quality of life


Although there is still no cure for MS, effective strategies are available to modify the disease coursetreat exacerbations (also called attacks, relapses, or flare-ups), manage symptomsimprove function and safety, and provide emotional support.
In combination, these treatments enhance the quality of life for people living with MS.

Modifying the Disease Course

The following agents can reduce disease activity and disease progression for many individuals with relapsing forms of MS, including those with secondary progressive disease who continue to have relapses.
Continue to read this in-depth posting of MS disease treatments
Click here


Then return to this screen, if you want to leave a comment

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Wednesday, April 10, 2013

Managing Pain and Sleep Issues in MS Part 1 - Pain in Multiple Sclerosis

April 2013


Thousands of people with MS are told by their doctors that the disease doesn't cause pain. However, it is now clear that MS can indeed cause pain. Regardless of the type of pain you experience, pain has a negative impact on your quality of life. Learn more about the root causes of pain and their best management strategies in this video presentation featuring doctors involved in the treatment of pain in MS and researchers working to identify the cause.

Click here to view the webcast

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Babies' Birth Month May Affect MS Risk: Study Shows Lower levels of vitamin D seen among those born in May

April 8, 2013


WebMD News from HealthDay

Lower levels of vitamin D seen among those born
By Mary Elizabeth Dallas
HealthDay Reporter

MONDAY, April 8 (HealthDay News) -- A newborn's immune system development, vitamin D levels and risk for multiple sclerosis may be influenced by the month of birth, new research suggests.
A study conducted in London found that babies born in May have significantly lower levels of vitamin D and a potentially greater risk for developing MS than babies born in November. Multiple sclerosis is a disabling neurological condition that can lead to problems with vision, muscle control, hearing and memory.
The findings suggest that more research is needed to explore the benefits of prenatal vitamin D supplements, according to the report, published in the April 8 issue of the journal JAMA Neurology.
The study involved cord blood samples taken from 50 babies born in November and 50 more samples taken from babies born in May between 2009 and 2010. The samples were collected in London, where the "month of birth" effect is particularly evident. Previous studies suggested the risk of MS is highest for people born in May and drops for those born in November, the study authors noted.
The blood samples were analyzed to assess levels of vitamin D and white blood cells involved in the body's immune response. White blood cells are capable of attacking the body's own cells, as they do in MS, the researchers said.
The study found that May babies had vitamin D levels roughly 20 percent lower than babies with November birthdays. The May babies also had roughly double the level of potentially harmful autoreactive T-cells than the November babies.
"By showing that month of birth has a measurable impact on in utero immune system development, this study provides a potential biological explanation for the widely observed 'month of birth' effect in MS," study co-author Dr. Sreeram Ramagopalan, a lecturer in neuroscience at Barts and The London School of Medicine and Dentistry at the Queen Mary University of London, said in a university news release.


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Annette Funicello: Saying Goodbye To A Princess

Written By:

Cathy Chester





Posted: 04/09/2013 ....


The news of her passing shook me, like I'd lost a dear friend or a member of my family. Annette Funicello was more than just a Mousketeer, beach blanket beauty or a Skippy peanut butter mom to me. She was a member of the MS community that is my extended family. A family where bonds are made not by blood, but by having to confront the challenge of living with an autoimmune disease.
I was diagnosed the same year as Annette, yet, as anyone with MS knows, no two people with MS are alike. When Annette reported her diagnosis to the world (to combat rumors of alcoholism; she had trouble with her gait), she had already been suffering with it for years. The next year she opened the Annette Funicello Fund for Neurological Disorders at the California Community Foundation.
I'd seen her in the news from time to time, first with a cane, then in a wheelchair. The girl I loved watching in The Mickey Mouse Club, the princess who always won Frankie's heart, was slowly deteriorating. I couldn't wrap my head around it.
As a health advocate, I explain to newly diagnosed patients we are all like snowflakes. Our stories of MS differ from one another. MS is an unpredictable disease with countless symptoms. They may include difficulty with walking, speech, vision, bowel and bladder or memory. One person's experience is different from another's.
There are different types of MS as well. I have relapsing remitting MS, experiencing periods of attacks with a worsening of neurologic function, followed by partial or complete recovery of symptoms. Annette had a more progressive MS, perhaps with some periods of relapsing, followed by a steady worsening of her bodily functions.
In her biography "A Dream is a Wish Your Heart Makes: My Story" (1994), Annette detailed her life and struggles with Multiple Sclerosis in her usual cheery voice. Like the storybook princess she was, she spoke of her good fortune in meeting Walt Disney when he spotted her in a dance recital. He catapulted her into becoming America's princess through The Mickey Mouse Club and other Disney vehicles, always guarding her all-American girl image in her television and movie appearances.
I've known directly, or indirectly, of famous and not so famous people who passed away from complications of MS (no one dies directly from the disease). There were friends and colleagues I worked with in the fight against MS. And then there were famous people, such as Richard Pryor, Barbara Jordan, Margaret Leighton, Ronnie Lane and Madelyn Rhue.
But Annette, well Annette was different for me. I felt I knew her. Her indomitable spirit in the face of adversity made me proud to count her as part of my MS family. She threw herself into the limelight through her book, cameo appearances and charity work. She showed the world that the face of MS could be brave, beautiful and intelligent.
She will always be a princess to me and to the millions of fans who loved her. Rest in peace, sweet Annette.

Follow Cathy Chester on Twitter: www.twitter.com/@CathyChes






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Tuesday, April 9, 2013

Health Canada Approves TECFIDERA™ As A First-Line Oral Treatment For Multiple Sclerosis


TECFIDERA™, formerly BG-12, provides a combination of proven efficacy and favourable safety profile

MISSISSAUGA, ON – April 9, 2013 Today, Biogen Idec Canada announced the Health Canada approval of TECFIDERA™ (dimethyl fumarate) delayed-release capsules, formerly BG-12, as a first-line oral treatment for adults with relapsing-remitting multiple sclerosis (RRMS). TECFIDERA is indicated as monotherapy for the treatment of RRMS to reduce the frequency of clinical exacerbations and to delay the progression of disability.[i]

“The approval of dimethyl fumarate is a significant advancement for people living with multiple sclerosis, helping address many treatment barriers that may affect medical intervention," said Dr. Marcelo Kremenchutzky, lead clinical researcher and Director of the Multiple Sclerosis Clinic, London, Ontario. “With this new oral medication, Canadian patients have access to a disease-modifying treatment that offers convenient oral administration coupled with clinically proven effectiveness and favorable safety profile."

Findings from both Phase III two-year studies, DEFINE and CONFIRM, showed that TECFIDERA demonstrated robust clinical and radiological efficacy over time in a broad range of patients with RRMS, while maintaining consistently favourable safety and tolerability.[ii]

“We welcome the approval of an additional treatment option for people living with relapsing forms of MS,” said Sylvia Leonard, President, Ontario and Nunavut Division and National Vice-President, Programs and Services of the Multiple Sclerosis Society of Canada. “As with any new therapy, we recommend that people with MS contact their physician to find out more information.”

MS attacks the protective covering, or myelin, around the nerves of the central nervous system (CNS).[iii] Nerve damage, caused by inflammation, occurs when the body's immune cells attacks the nervous system along any area of the brain, optic nerve, and spinal cord.[iv] 

TECFIDERA is the only compound for the treatment of multiple sclerosis (MS) known to activate the Nrf2 pathway, in vitro and in vivo animals and humans, a central mechanism of cellular defense.[v] TECFIDERA may work by changing the way the body’s immune system works, to help keep it from further damaging the brain and spinal cord, although the exact mechanism is not known.[vi]
“We believe TECFIDERA will raise expectations for what people living with MS can achieve from their therapy,” said Paul Petrelli, Managing Director, Biogen Idec Canada. “TECFIDERA marks the fourth therapy we provide in Canada to treat this highly complex disease. No one is doing more for people living with MS and Biogen Idec is fully committed to delivering innovative treatments, as well as best-in-class support services for MS patients.”

Data proves efficacy in two of the largest Phase III studies ever in MS
The Health Canada approval of TECFIDERA is based on data from DEFINE and CONFIRM, two global Phase 3 studies, involving more than 2,600 RRMS patients, as well as an ongoing extension study in which some patients have been followed for more than four years. In DEFINE, TECFIDERA, administered twice daily, significantly reduced the proportion of patients who relapsed by 49 per cent (p<0.0001), the annualized relapse rate (ARR) by 53 per cent (p<0.0001), and 12-week confirmed disability progression, as measured by the Expanded Disability Status Scale (EDSS), by 38 per cent (p=0.0050) compared to placebo at two years. In CONFIRM, twice-daily TECFIDERA significantly reduced ARR by 44 per cent (p<0.0001) and the proportion of patients who relapsed by 34 per cent (p=0.002) compared to placebo at two years. While not statistically significant, TECFIDERA showed a 21 per cent reduction in 12-week confirmed disability progression in CONFIRM. Both studies also showed TECFIDERA significantly reduced lesions in the brain compared to placebo, as measured by magnetic resonance imaging (MRI).[vii]

About TECFIDERA
TECFIDERA provides a new approach to treating MS and is the only known compound to activate the Nrf2 pathway, although the exact mechanism of action is unknown. This pathway provides a way for cells in the body to defend against inflammation and oxidative stress caused by conditions like MS. Research in vivo and in vitro in animals suggests that TECFIDERA can reduce the impact of inflammatory cells on the CNS and may provide protection against harmful agents in CNS cells. These effects may enhance the CNS cells' ability to reduce inflammatory stress that plays a role in the physiological processes associated with MS.[viii]

Important Safety Information
The most common side effects associated with TECFIDERA seen in clinical trials are flushing and gastrointestinal events such as diarrhea, nausea, and abdominal pain. Other side effects include a decrease in mean lymphocyte counts during the first year of treatment, which then plateaued, and elevations of hepatic transaminases primarily during the first six months of treatment. Reports of protein in the urine were slightly higher for patients treated with TECFIDERA although the significance of these clinical observations is unknown. There was no increased risk of malignancy, infections or serious infections associated with TECFIDERA treatment.

About Biogen Idec ONE™ Patient Services Program
Biogen Idec Canada is committed to delivering best-in-class quality and services to care for MS patients. All TECFIDERA patients will have access to a Regional Support Nurse in their region that will provide personalized support for patients and healthcare providers in all aspects of patient care, from treatment to reimbursement. This enables healthcare providers and patients the opportunity to work directly with one nurse per region across all Biogen Idec Canada MS products, which is intended to enhance the quality and continuity of care that we can provide to patients. For more information about the Biogen Idec ONE™ program, call 1-855-MSONE-00 or 1-855-676-6300.

About Multiple Sclerosis
MS is an unpredictable, often debilitating disease of the CNS that attacks the protective covering, or myelin, of the brain and spinal cord, causing inflammation and damage.[ix] When this occurs, the normal flow of nerve impulses along nerve fibres, or axons, becomes disrupted.[x] The result of damaged myelin may be a wide variety of MS symptoms including fatigue, weakness, muscle spasms, pain, tremors, double vision, bladder and bowel dysfunction, cognitive deficits and loss of mobility, among other problems.[xi],[xii]

MS is most often diagnosed in young adults, aged 15 to 40, but sometimes affects children as young as two years old.[xiii] The course of MS is heterogeneous, but generally occurs over 30 to 40 years, and is characterized by multiple neurologic deficits, decreased quality of life[xiv] and significant socioeconomic burden.[xv] 

Multiple Sclerosis in Canada
Canada is known for having one of the highest prevalence of MS in the world.[xvi] Currently, more than two million people are estimated to suffer with MS worldwide,[xvii] including between 55,000 and 75,000 Canadians. The overall weighted estimate of MS rates in Canada is 240 per 100,000 people[xviii] causing three or more people per day to be diagnosed with MS.[xix] 

About Biogen Idec Canada
Biogen Idec Canada is the Canadian affiliate of Biogen Idec. Through cutting-edge science and medicine, Biogen Idec discovers, develops, manufactures and markets therapies for diseases with a focus on neurology, immunology and hemophilia. Founded in 1978, with a presence in Canada since 1998, it is the world's oldest independent biotechnology company. Patients worldwide benefit from its leading multiple sclerosis therapies and the company generates more than $5 billion in annual revenues. For press releases and additional information about the company, please visit www.biogenidec.com.

-30-

For more information or to arrange an interview, please contact:
Rick Maddalena
GCI Group (Canada)
416-486-7225
GCI GROUP : changeRULES
rickmaddalena | gcigroupconsultantphone: 416.486.7225 | fax: 416.486.9783 |





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Thought control of robotic arms using the BrainGate system - for Neuro Rehabilitation



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MS One to One - a New Patient Advocacy website

MS One to One is provided by Genzyme

Click here: https://www.msonetoone.com
to see what this new website has to offer.



Stay educated. Learn from varying MS educational websites.
Another of course is MS Views and News and from the blog that you are reading this message


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Monday, April 8, 2013

ANNETTE FUNICELLO Legendary Mouseketeer DEAD AT 70 - of complications from Multiple Sclerosis

Annette Funicello -- the undisputed queen of the "Mickey Mouse Club" -- has died, according to Disney's official fan club Twitter. She was 70. 

Funicello was a triple threat -- Mouseketeer, pop singer and bigscreen star. She was huge in the 60's with movies like "Beach Party," Bikini Beach," and "Beach Blanket Bingo."

According to "Extra," Annette had been hospitalized in Bakersfield due to complications from multiple sclerosis and had been in a coma. 

Funicello disclosed in 1992 that she suffered from multiple sclerosis. She lost the ability to walk in 2004, could no longer speak by 2009 and required round-the-clock care.

Read more:  CLICK HERE


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Sunday, April 7, 2013

Brain Exercise FOR MS

Wow- I had fun with this first exercise -- Tough it was...


Gay, from the Windward Design Group offered this to me, to share with all of you:


Bill Hufschimdt from Jai Shanti Yoga Studio in Atlanta posted this
Brain Exercise FOR MS video on You Tube: 







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Biogen Hits Primary Endpoints in MS Study

April 6, 2013
By  


Biotech company Biogen Idec's developmental multiple sclerosis drug daclizumab succeeded in the SELECT phase 2b trial evaluating its safety and effectiveness in treating patients with relapse-remitting MS. The trial results, originally published in The Lancet and reported by Biogen in a recent press statement, showed that two injection treatment groups had annual relapse rates at least 50% lower than a placebo group after one year.
The two treatment groups also showed that daclizumab reduced MS-related brain lesions and improved quality of life in patients, as well as reducing disability progression.
Dr. Gilmore O'Neill, Biogen's vice president of medical research, said of the results, "Based on these initial data from SELECT, we believe DAC HYP would complement our robust portfolio of four approved MS products by potentially offering people with MS a new treatment alternative."
Daclizumab is Biogen's latest developmental candidate in the multiple sclerosis market it has dominated. The company's oral MS treatment, Tecfidera, won FDA approval in late March and is poised to compete in the promising oral MS market.
source: Motley

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MS Patients on Oral Therapies Are More Optimistic About Their Disease, According to Kantar Health Survey


Oral disease-modifying drugs are recent additions to the multiple sclerosis market.

New York, NY (PRWEB) April 03, 2013
Multiple sclerosis patients who are taking oral disease-modifying drugs (DMD) are more optimistic about their future expectations for their disease than patients who are taking non-oral DMDs, according to new research from Kantar Health, a leading global healthcare advisory firm.
More than 950 MS patients were asked to predict whether they expected their disease to improve, worsen or be the same in a year. Among patients taking oral DMDs, 34 percent expect their disease to be better and 49 percent expect their disease to worsen, compared with 16 percent of patients taking non-oral DMDs expecting their disease to improve and 62 percent expecting it to worsen.
Additionally, patients who take oral DMDs are more satisfied with their lives since starting their current treatment. Thirty-six percent of MS patients on oral DMDs are more satisfied with their lives since starting their current treatment, compared with 27 percent of patients taking non-oral DMD treatments.
About three in four of the DMD patients who plan to ask their physician to switch them to a specific brand say they will request an oral DMD. Still, many physicians seem hesitant to prescribe an oral DMD.
“Oral treatments for MS have been on the market for about two years, and we’re starting to see patients who have had a relapse in the past two years switching to the oral DMDs,” said Rose Lorenzo, director of research at Kantar Health. “While patients who have switched to oral DMDs are significantly more satisfied with their treatment, doctors are still wary about the lack of safety data and potential side effects. Both patients and physicians may be more open to oral treatments as additional data becomes available.”
About Kantar Health Syndicated Studies


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