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Friday, October 31, 2014

Seeking dollars for Stem Cell Research for MS

We are asking that if you want to make a donation -- to support Stem Cell Research (for MS) - then in return for a $30.00 donation (if living in the USA) you will be mailed one of these shirts --

If interested in making a $30.00 donation go to: www.donations.msviewsandnews.org 

In the amount box - enter $30.00  unless you want to donate more

In the comments - provide us with your mailing address, phone number, email address,
   and T-shirt size

Please understand that we can only mail to those in the USA

Thank you for your interest in helping us to fund Stem Cell Research


New iPad App Tracks MS Patient Course

Researchers at the University of California, San Francisco, have developed a new tool that allows clinicians to track an individual’s disease course over time and compare it to a core data set of other MS patients. The tool is currently in beta-testing at UCSF.

Pierre-Antoine Gourraud, Ph.D., of the University of California, San Francisco, and I huddled around his iPad and gazed at the screen. On it was a magnetic resonance imaging scan of an anonymous patient’s brain. The scan was organized in three panels, showing me front, side, and middle cross sections. With my index finger, I turned the scan around so I could see it from all angles and slid the planes up and down, back and forth, to move through the three-dimensional scan.

“That was a very big, technical challenge of the application,” Gourraud said to me as I watched the brain expand and the sulci undulate as I moved the sliders through three different planes. This interactive three-dimensional MRI scan is one of many features on BioScreen, the new mobile application Gourraud and his colleagues are developing. A description of the device was published online ahead of print in the journal Annals of Neurology (Gourraud et al., 2014).

BioScreen is a tablet-based tool that will allow physicians and their patients to track the course of the disease within the individual patient, and then compare it to a large data set consisting of over 600 patients. The core data set comes from information gathered from UCSF researchers in the Expression, Proteomics, Imaging, Clinical (EPIC) study, a longitudinal observational study that collected detailed data spanning MRI, clinical data, genomics, and biomarkers over the course of 10 years.

In his grandest vision, Gourraud imagines a world where every clinician has access to this core data set, which he plans to expand using data from clinics across the globe. Any clinician could then compare the disease course of his or her individual patient with that of the entire group. In the current prototype, the comparison group can be narrowed down based on a number of factors, including but not limited to age, gender, and Expanded Disability Status Scale (EDSS) score.

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Sanofi Recruiting for Teriflunomide ( AUBAGIO® ) Phase 4 Study

information showing below, was in-part obtained from the MSF

Sanofi Recruiting for Teriflunomide Phase 4 Study

Sanofi is seeking recruits for a Phase 4 study to describe effectiveness, tolerability, and convenience of teriflunomide treatment through the evaluation of patient-reported outcomes.

The total duration of the study per patient is up to 50 or 54 weeks (if accelerated elimination procedure is performed), including screening for up to two weeks, teriflunomide treatment for 48 weeks, and accelerated elimination procedure for four weeks, when performed. An accelerated elimination procedure at any time after discontinuation of teriflunomide treatment is possible, and it is particularly recommended for women of child-bearing potential.

Male and female MS patients with a relapsing form of multiple sclerosis having signed written informed consent and are 18 years and older are eligible to participate.

Exclusion criteria includes, according to local labeling, less than 18 years of age, current or history of receiving teriflunomide, previous treatment with leflunomide within six months prior to baseline, patients with pre-existing acute or chronic liver disease, or those with serum alanine aminotransferase greater than two times the upper limit of normal, known history of active tuberculosis or latent TB infection, known history of severe immunodeficiency, acquired immunodeficiency syndrome, bone marrow disease, acute or severe active infections, women who are pregnant or breast-feeding, female patients with a positive pregnancy test at screening or women of child-bearing potential who do not agree to use reliable contraception throughout the course of the study, male patients (only when required according to local labeling) unwilling to use reliable contraception during the course of the study, hypersensitivity to the active substance or to any of the excipients, other additional contraindications per local labeling. The above information is not intended to contain all considerations relevant to a patient's potential participation in a clinical trial.

To learn more about this study and find the investigation site nearest to you, visit clinicaltrials.gov/ct2/show/NCT01895335?term=multiple+sclerosis&recr=Open&cntry1=NA%3AUS&phase=23&rank=2

You or your doctor may contact the study research staff using the contacts provided. 

Refer to this study by its ClinicalTrials.gov identifier: NCT01895335. 

For investigation site information, send an email with site number to Contact-Us@sanofi.com.

View Multiple Sclerosis Slideshow Pictures

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Researchers Discover Cognitive Shortcomings linked to PPMS

In an MRI study of 26 patients with primary progressive multiple sclerosis, researchers discovered widespread cognitive abnormalities. They also found that those abnormalities have a link to cognitive performance.

When compared to 20 healthy individuals, researchers found that individuals with PPMS experienced cortical organization dysfunction and connection problems in three specific regions of the brain. These were found to affect processing speed, executive function, and verbal fluency.

Primary progressive multiple sclerosis is characterized by steady clinical deterioration without remission from disease onset.

This information was obtained from the MSFYi e-Newsletter on Oct 31, 2014

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Help Push the Complex Rehab Bill Over the Finish Line!


We’ve come a long way on an important federal bill that would help people with progressive MS and we can’t stop now!

MS activists have helped gain significant congressional support for a bill that helps people with MS access complex rehabilitation technology through Medicare—which are individually customized products including manual and power wheelchairs and seating and positioning systems. These products not only meet the medical needs of people with progressive MS—but allow them to remain independent and active members of their community.

Since MS activists first started educating Capitol Hill about the importance of this bill at the Public Policy Conference in March, more than 90 members of Congress have joined as cosponsors. Your member(s) of Congress is one of these supporters and can help push this bill over the finish line. Email your member(s) of Congress today to thank them for their support and ask them to urge committee leadership to advance this bill. Congress will only be in session for a brief time after the election, so they need to hear from you now and make passing the Ensuring Access to Quality Complex Rehabilitation Technology Act a priority!

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Multiple Sclerosis unit closure 'will be devastating'

Closing Northern Ireland's only dedicated respite centre will have a devastating impact on people with multiple sclerosis, a woman who uses the unit has said.
It is one of a number of cuts to the health service announced on Thursday.
More than 4,000 people in Northern Ireland are affected by MS, one of the highest rates in the world.
The unit, in Dalriada Hospital in Ballycastle, will close until March next year.
It has 12 beds where patients can get respite.

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MS and Family Planning - CME/CNE Activity

MS leaders e-mail logo header 

Dear Colleague,

EARN CME or CNE Credit!

The Johns Hopkins University School of Medicine and the Institute for Johns Hopkins Nursing, in cooperation with Medical Logix, LLC, are currently offering this educational program certified for CME and CNE credit, at no charge to participants:

 Video Clinical Dialogue and eCase Challenge:

Jointly presented by the Johns Hopkins University School of Medicine and the 
Institute for Johns Hopkins Nursing

Release Date: May 7, 2014
Expiration Date: May 6, 2015

Estimated time to complete each part of this activity: 60 minutes for each of the two activities. Each part of this activity has been approved for a maximum of 1.0 AMA PRA Category 1 Credit™ and 1.0 contact hour for nurses. There are no fees or prerequisites.

Supported by independent educational grants from
EMD Serono and Genzyme, a Sanofi Company.

Learning Objectives
After participating in this activity, the participant will demonstrate the ability to:
  • Recognize the importance of providing preconception counseling to all patients of childbearing age in order to reduce reproductive risks.
  • Apply the most recent evidence concerning the reproductive safety of approved DMTs when counseling patients with MS who are considering pregnancy or those who are pregnant.
  • Summarize and provide context for the available data (animal and human) concerning the reproductive safety of newer and emerging DMTs.
  • Assess the available evidence regarding DMTs and male reproductive health in order to effectively communicate their potential risks to male patients with MS.
  • Discuss the evidence on the safety of DMTs used during lactation, in order to optimize outcomes for patients with MS who breastfeed their infants.
  • Implement evidence-based treatment strategies to optimize the management of postpartum relapses.
The Johns Hopkins University School of Medicine takes responsibility for the content, quality, and scientific integrity of this CME activity.

Statement of Need
Multiple sclerosis typically affects women of childbearing age and can influence fertility, pregnancy and decisions regarding breastfeeding. Management of a pregnant patient with MS or a patient contemplating pregnancy presents many unique issues and can be quite challenging.

The intent of this Clinical Dialogue, a video-based activity, is to review the most up-to-date evidence on MS, specifically on fertility and pregnancy outcomes, management of MS during pregnancy, the reproductive safety of DMTs, their use when breastfeeding and issues related to postpartum management. We will also address preconception issues, including pregnancy outcomes when it is the male patient who has MS. The eCase Challenge, a text-based activity, will allow the participant to apply the knowledge gained from this Clinical Dialogue in a few real-world clinical scenarios.

It is important to emphasize that the questions and answers discussed in this program must be individualized to the specific circumstances of each patient and their acceptance of risk.

Johns Hopkins Chair and Course Director:
Jack N. Ratchford, MD
Assistant Professor of Neurology
Johns Hopkins University School of Medicine
Baltimore, MD

Jack N. Ratchford, MD
Assistant Professor of Neurology
Johns Hopkins University School of Medicine
Baltimore, MD

Patricia K. Coyle, MD
Professor and Vice Chair
Department of Neurology
Director, Multiple Sclerosis Comprehensive Care Center
SUNY at Stony Brook University Medical Center
Stony Brook, NY

Lynn Stazzone, RN, MSN, NP, MSCN
Nurse Practitioner
Partners MS Center
Brigham and Women's Hospital
Boston, MA

Intended Audience
Healthcare professionals, specifically, neurologists, internists, family practice physicians, nurse practitioners, physician assistants, registered nurses and other providers involved in the care of patients with multiple sclerosis.

Jointly presented by the Johns Hopkins University School of Medicine and the Institute for Johns Hopkins Nursing 

This activity has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education through the joint sponsorship of the Johns Hopkins University School of Medicine and the Institute for Johns Hopkins Nursing. The Johns Hopkins University School of Medicine is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

The Institute for Johns Hopkins Nursing is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center's Commission on Accreditation.

Credit Designation Statement
The Johns Hopkins University School of Medicine designates this enduring material for a maximum of 2.0 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Nurse Practitioner and Physician Assistant Credit Reciprocity:

American Association of Nurse Practitioners (AANP) accepts AMA PRA Category 1 Credit™ from organizations accredited by the ACCME.

American Academy of Physician Assistants (AAPA) accepts certificates of participation for educational activities certified for AMA PRA Category 1 Credit™ from organizations accredited by the ACCME. Physician assistants may receive a maximum of 2.0 credits of Category 1 for completing this program.

Disclosure Policy Affecting CME Activities
It is the policy of the Johns Hopkins University School of Medicine that the faculty and provider disclose real or apparent conflicts of interest relating to the topics of this educational activity, and also disclose discussions of unlabeled/unapproved uses of drugs or devices during their presentation(s). Johns Hopkins University School of Medicine OCME has established policies in place that will identify and resolve all conflicts of interest prior to this educational activity.  Detailed disclosure will be made in the course materials.

 To view the activity, please CLICK HERE 

Please keep in mind that you will need to login with your email address and password to access this program. If you forgot your password, click on the "Forgot Password" link in the top right corner of the site.

We hope you enjoy this informative educational program!

The MS-Leaders Team

The Johns Hopkins University School of Medicine Office of Continuing Medical  Education, Turner 20, 720 Rutland Ave, Baltimore, MD 21205

In cooperation with Medical Logix, LLC

Medical Logix, LLC, 1313 New Virginia Road, Downingtown, PA 19355

Please do not respond to this email directly. Any questions or concerns,
email: support@ms-leaders.org 



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Wednesday, October 29, 2014

Talk About Medicines Month - a patient's testimonial and alternative therapy

Talk About Medicines Month

New blog post from Jon Chandonnet below!

Oct 28, 2014 10:29 pm
Talk About Medicines Month
October is talk about medicines month, and I wrote this post for the American Recall Center, a site devoted to providing up-to-date medical drug and device recall news in simple, straightforward terms.


When diagnosed with multiple sclerosis (MS), seventeen years ago, my doctors immediately wanted to put me on the new blockbuster MS therapy, Betaseron. It was the first FDA approved medication to treat relapsing remitting MS, the strain of the disease I was thought to have. The drug showed efficacy at slowing progression in clinical trials and held promise for those living with the disease; I resisted.


Part of me hadn’t fully internalized the diagnosis. I was a young guy and didn’t appreciate my mortality. I wanted to experience what it meant to live with the disease and see how it affected me before taking any drug. I really wanted to see if the force of my individual will could keep symptoms at bay. Naive, probably, but that’s the where I was.
I successfully lived in denial for the next six years. Threat of the disease caused me to push life’s accelerate button. I lived an adrenaline infused existence, looking over my shoulder, in an attempt to outrun the disease. I ran marathons, climbed 14,000 foot California peaks, and worked sixty, sometimes eighty-hour weeks, to prove I was okay. At thirty-three, I believed I had found the answer to living a great life in spite of the diagnosis, denial. I showed no outward symptoms and believed I had cracked the code to living with chronic illness.


That reality crashed down around me over the next two years. Symptoms began to show. I tripped at a marathon water stop, and things progressed from there. I fell down stairs and began to shuffle my feet like an elderly man. I lost felling below my elbows and knees, my mind went in circles. I failed an online test at work I had been around long enough to teach. My speech was faint and strained. Words had trouble making it off my tongue and out my mouth.

In an attempt to arrest the decline, I cycled through each of the newly approved MS therapies; first Rebif, then Avonex, and finally Copaxone. None of them slowed the progression. I bottomed out and began to search for alternative therapies. I came across a number of people who improved their symptoms through diet, lifestyle change, and a diligent focus on well-being. I decided to try it. There was nothing to lose. I asked for four months off work and went to the Optimum Health Institute (OHI) to focus on my health.


Over that four-month period my health improved. My gait evened out, my mind cleared, feeling returned to my extremities, and my speech became more fluid. I attribute the shift to a mindfulness of everything moving through my body (food, water, thought and emotion). I realized that inputs, combined with thought and habit, were the key to maintaining my health. There was no magic bullet, just a simple understanding that all I am is what moves through my body in combination with thought and habit. I also attribute the shift to finally taking responsibility for my health. It wasn’t the doctor’s job or that of any drug to keep me healthy. Responsibility started with me.
Today, nine years after returning from OHI, I remain mindfully focused on the things entering my body. I take Copaxone, one of the half-dozen FDA approved therapies and am on the constant lookout for things to add to my routine to live the best life I can in spite of the hand dealt. You can read my story here.
If this philosophy resonates, what is the most difficult aspect of practicing mindfulness?

Jon Chandonnet
View it in your browser

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Viz creator Simon Donald tells how he discovered he had multiple sclerosis while on camera

Simon Donald, 50, was filming a documentary about the condition in 2009 when he found out he had MS himself

Simon Donald, creator of the Viz
Viz creator Simon Donald has been talking about the moment he was diagnosed with multiple sclerosis - on camera.
The comedian, who founded the cult comic with his brother Chris, was presenting a documentary aiming to lead viewers through the process and tests a person would go through if it was suspected they had MS.
Simon was asked to present it because his mother had lived with MS since he was was born in 1964. But he never imagined that he too would test positive.
“You couldn’t really have made it up,” he said. “I turned up to get the results of the tests with a film crew and the next thing, they were telling me that I did in fact have MS.
Continue reading and watch Simon's video by clicking here

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Tuesday, October 28, 2014

To deplete or not to deplete that is the question?

Leucopaenia (low white blood cell) has become a hot topic of the past week, with the realisation that people who get leucopaenia (low white blood cell counts) are more at risk from infection and the dreaded PML. 

So now there  is a rush to stop the level of lymphopaenia from occurring, but one question is. Do we want our cake and eat it?Because we have to ask how do the MS-drugs stop MS?  

In many cases it is because of leucopaenia. This may be physical depletion of cells out of the body and the blood, in particular, such as with alemtuzumab or rituximab or it may be a functional leucopaenia, such as with Tysabri, where the cells are in the blood but because they cant get out of the blood they are powerless to deal with the infection within the brain.

I have heard it said that the efficacy of alemtuzumab or cladribine does not relate to the level of leucopaenia, which may be in part the case, but if you did not get leucopaenia would these drugs work...I really doubt it. 

Read more from here

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Monday, October 27, 2014

Triad Organization (in Winston, NC) Helps Those Living With Multiple Sclerosis -

WINSTON-SALEM—Multiple Sclerosis, better known as "MS," is the most common disabling neurological disease of young adults in the U.S.
But there's a new program in the Triad to help folks living with the disease better cope. Ever since Brian Murrill's mom, Patsy, was diagnosed with MS in 1995, he knew he wanted to do something big to help her and others living with the disease.
“Throughout the years, we've noticed the slow progression of the disease. At one point, she had some concerns about staying active,” said Brian Murrill.
That's when the MSfit Foundation was born.
"I had a doctor tell me one time, 'If you don't use it, you'll lose it.' So I do what I can,” Patsy Murrill said.
The foundation is partnering with Winston-Salem's Gateway YWCA to develop fitness programs, like water aerobics.
"When you're in the water, there's no gravity,” said Gateway YWCA director Greg Fagg. “They're low-impact classes in the water, but it still strengthens their muscles. They're doing all sort of activities without joint pain or strength on the body."
"We offer aerobic, strengthening, balancing and aquatic exercises,” Brian Murrill said.
In addition to fitness programs,  (( - See more and watch a video, found here  ))

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Sunday, October 26, 2014

Multiple Sclerosis and Vision

Learn about vision issues with relapsing multiple sclerosis and tips to help you with vision-related symptoms. Muhammad Tariq Bhatti, MD, explains causes, symptoms, and optic neuritis. Heidi, an MS LifeLines Ambassador who is living with MS, shares her experiences and insights. Dr. Bhatti also answers questions about other MS symptoms.

Click here to watch this video interview

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