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NOW Quarterly Update

Winter 2015-2016


In this article

Groundbreaking NOW Campaign on the verge of success

With nearly $250 million raised in the last five years, the National MS Society is on the verge of completing the largest MS research campaign in history – the groundbreaking NOW MS Research Campaign. With anticipated generous year-end contributions, this unprecedented milestone will be reached by December 31.

The Society has been described as THE catalyst in MS research progress and has invested over $900 million in MS research since its founding in 1946. The NOW Campaign has generated more than a quarter of that total in just the last 5 years. This significant increase in investments, fueling a total of 818 cutting-edge research projects, continues to transform the landscape of MS research.

Significant progress during the five years of the NOW campaign has improved life with MS and the future outlook has never been brighter. Five new FDA-approved treatment options became available for people with relapsing remitting forms of MS. This means that people living with MS now have more choices for living their best lives.

There are also more potential treatments in the pipeline than any other time in history – a total of 291. Three promising myelin repair treatments are in clinical trials with encouraging results and several more therapies are being tested for progressive MS; one of which recently showed positive benefits for the first time in a large-scale clinical trial.

Significant progress is changing the world for people with MS:
  • 5 new treatments for relapsing remitting MS
  • MS treatment pipeline is larger than ever before
  • 3 promising myelin repair treatments in trials
  • First large trial of a treatment showing benefits for primary progressive MS
  • 200 genetic variants linked to MS
  • Several risk factors for MS

With the Society’s leadership in the International Progressive MS Alliance, a growing number of MS organizations and pharmaceutical companies around the world are committing resources and are collaborating to speed research to drive treatments for people with progressive MS. In the past two years alone, the Alliance has awarded 22 challenge grants and 11 new collaborative network planning grants across more than 20 countries. Through these grants, the Alliance is facilitating creation of at least three large-scale collaborative networks that will convene the worldwide experts necessary to find answers to the toughest questions we face in addressing progressive MS.

Even with all of this exciting progress toward stopping MS progression and restoring lost function, the Society’s ultimate vision is to end this disease and realize a world free of MS.

In the last five years, the Society has made significant progress toward ending MS forever. Close to 200 genetic variants linked to MS have been discovered and several environmental risk factors for progression have been confirmed, including smoking and low vitamin D.  These findings will help unlock the mysteries of MS and prevent it from ever occurring.

This unprecedented progress over the last five years would not have been possible without the passion and commitment of Society supporters, combined with the innovation of industry and relentless resolve of MS researchers around the globe. The Society is committed to accelerating MS research momentum and your continued support is vital to our success.

Watch our new Research Milestone video to learn about the research progress the Society has driven since our founding in 1946.

Capitalizing on our Success

It’s truly remarkable that in five short years, we have worked together and made history as a powerful MS movement. By transforming the pace of MS research progress, we have created vital impact on the lives of people with MS.

As you’ll read in this special final edition of the NOW Quarterly Update, life with MS and its future outlook has changed dramatically over the past five years thanks to your significant support. I hope that you feel proud and encouraged by the fact that people with MS now have more options for living their best lives because of the progress we’ve accomplished.

The NOW Campaign has expanded the comprehensive base of research knowledge, positioning the MS movement to further accelerate progress and deliver life-changing solutions.

As we look ahead, we plan to capitalize on our NOW success by reaching even further to launch a bigger, bolder funding platform that will drive our entire mission; a funding platform that will connect and fuel all facets of the Society’s work including  services, research, advocacy, connections and more.

With a more comprehensive funding approach, we will ensure that everyone who wants to do something about MS can accelerate progress and change the world for people affected by this disease.

I look forward to making history with you once again, as we continue our work to realize a world free of MS. 

Yours truly,

Cyndi Zagieboylo, President & CEO

Cyndi Zagieboylo
President & CEO

New research highlights

On November 5th, the National MS Society announced a commitment of $21 million to support 78 new research projects, bringing total 2015 commitments to a record $54.6 million. Here’s a look at some of the promising avenues researchers are exploring:

  • New Avenues in Repair – New York University researchers have found an unexpected subtype of stem cells in the brain that become activated and transform into myelin-making cells in response to myelin damage. Blocking or eliminating a molecule, called Gli1, stimulated the cells to repair damaged myelin more effectively. Through Fast Forward, the Society will provide funding to continue the search for better Gli1 blockers and test their potential use in repairing myelin in people with MS.
  • Enhancing Self-Repair – Researchers at Baylor College of Medicine are investigating a protein that may play a role in myelin repair and replacement of lost nerve cells, two events that may improve progressive MS. If this research is successful, it could someday lead to the development of a therapy that stimulates the natural ability of brain cells to repair the brain.
  • Trial Exploring Low-Sodium Diet – Researchers at the Icahn School of Medicine at Mount Sinai are conducting a small trial to determine whether a salt-lowering treatment affects MS progression. High-salt diets have been linked to increased inflammation, and exploring a treatment that lowers sodium levels may uncover clues to what causes progression and how to stop it.
  • Unique Stem Cell Approach – University of Glasgow, Scotland researchers are investigating if adult stem cells from the nose can dampen harmful aspects of the immune system and improve myelin repair in rodent models of myelin loss. This may lead to using nose-derived stem cells to test for their benefits in treating people with MS.
  • Air Pollution as Potential Risk Factor for MS - Investigators at Harvard are exploring whether exposure to air pollution is associated with risk of MS. If air pollution is associated with increased risk of MS, this could provide further scientific evidence for advocating for pollution reduction policies, and also contribute to research to understand the cause of MS.

Big news at ECTRIMS 2015

The accelerated pace of MS research was on full display at the recent ECTRIMS (European Committee for Treatment and Research in MS) meeting in Barcelona, Spain – the world’s largest gathering of MS researchers.  Over 9,000 investigators convened in October to share breaking news and progress towards stopping MS, restoring lost function and ending MS forever. Below you’ll find a few of the highlights.

Ocrelizumab in Primary Progressive MS 
Making the most “buzz” were results presented on a clinical trial by Genentech (a member of the Roche Group) involving 732 people with primary progressive MS treated with the monoclonal antibody ocrelizumab. Ocrelizumab targets a protein that appears on immune B cells during specific stages of their life cycle. B cells make antibodies to help fight infection and perform other functions to stimulate the immune system. Results showed that compared to placebo, ocrelizumab modestly reduced the risk of progression and had other positive outcomes. This is the first large-scale clinical trial to show positive results in people with primary progressive MS. We don't yet know what mechanism might be driving these results in progressive MS, so we are eager to see more information when these results are published.

Ocrelizumab in Relapsing MS
Results from two phase III trials of ocrelizumab in relapsing MS were positive compared to Rebif®(interferon beta-1a, EMD Serono and Pfizer). Ocrelizumab reduced the risk of relapse by 46 to 47% compared to Rebif, reduced the risk of disease progression by 40%, and had other positive outcomes. The main side effects were reactions to the infusions, and a slight increase in infections. The sponsor, Genentech (a member of the Roche Group) stated that it plans to apply for marketing approval from the FDA in early 2016.

Minocycline Before MS Diagnosis 
Dr. Luanne Metz (University of Calgary) reported on a Phase III trial of an oral antibiotic called minocycline, which is often prescribed to treat acne. In addition to its bacteria-killing action, it reduces inflammation. The trial tested minocycline against placebo in 144 people who had clinically isolated syndrome. Results showed that over 6 months, those taking twice daily minocycline had a 44.6% reduced risk of developing definite MS, compared to those taking placebo. There were no unexpected side effects outside of the most common that occur with this antibiotic, which carries several warnings including that it is not to be taken during pregnancy.

Thyroid-Like Hormone for Repair 
Dr. Dennis Bourdette (Oregon Health and Science University) sped up myelin repair in mice using an experimental drug called sobetirome. This is a thyroid-like hormone that is already in clinical trials for lowering cholesterol. We know that the thyroid hormone boosts the capabilities of myelin-making cells, but is not viable to treat MS because of adverse effects on heart, bone, and muscle. Sorbetirome may work without these side effects; the Society is funding this team to explore this option in MS animal models. Since it is already in clinical trials for another indication, demonstrating safety and effectiveness in MS may take less time than usual. 

Myelin and Nerve Repair 
Dr. Bernard Mueller and colleagues (AbbVie Inc.) reported their findings on the experimental therapy ABT-555, which is an antibody to a signaling molecule in the nervous system. When ABT-555 was administered to mice with an MS-like disease, the mice recovered from disease, and experienced both myelin repair and nerve fiber regeneration within spinal cord lesions. Early tests of ABT-555 are underway in healthy volunteers and in people with MS.

More Anti-LINGO Results
Last spring promising results were reported from a phase 2 clinical trial of the myelin repair strategy called anti-LINGO (Biogen). The study involved IV infusions or placebo every 4 weeks for 20 weeks to 82 people who had a first episode of optic neuritis. Those who had been given anti-LINGO had faster nerve signals along the optic nerve of the affected eye, compared to those on placebo. Now Biogen researchers reported that in a sub-study involving 39 participants, those on anti-LINGO also had reduced loss of nerve signal strength in the unaffected eye, compared to placebo.  This suggests that anti-LINGO may have additional benefits in optic neuritis than previously reported. The therapy seemed to be well tolerated except for some infusion reactions. Another phase 2 trial is ongoing in people with relapsing MS.

Approaches to Diet 
The idea of intermittent fasting as a way to fight inflammation is being explored by MS researchers, but this kind of diet can be hard to sustain.. A small trial involving 48 people with relapsing-remitting MS was performed by Dr. Markus Bock and colleagues (Universitätsmedizin Berlin) took a different approach. The investigators studied various diets that may affect “ketone bodies” – molecules in the liver that may protect the brain and spinal cord. Compared to participants who just followed their usual diets, participants who followed either a “ketogenic diet” (a high-fat, adequate-protein, low-carbohydrate diet) or a prolonged-fasting diet (an initial 7-day fast followed by a Mediterranean diet) reported improved quality of life and had improved cholesterol levels. Larger studies are needed to fully explore the potential benefits of these approaches.

Gut Microbiome Offers Clue to Potential Treatment 
Dr. Aiden Haghikia (Ruhr-University Bochum, Germany) and colleagues previously found in mice that gut bacteria giving off short-chain (verses medium or long-chain) fatty acids could protect against the development of MS-like attacks. To translate these results to humans, the team administered daily capsules of “proprionate,” which contains short-chain fatty acids, to 18 healthy volunteers. They found no side effects, and also found that cells that activate immune attacks in MS were suppressed. They also reported that other cells, called Tregs, which can turn off attacks, increased by 25-30%. This early report suggests that after testing in humans, a nutritional supplement may be found to have benefits in people with MS.

Exercise Improves Brain Function 
Dr. Francesca Tona (Sapienza University, Rome) and colleagues looked first at whether 26 people with MS with balance problems would benefit from home-based training using videogames and the Wii balance board. They used the board and games five times a week for 30-minute sessions over 12 weeks. Many experienced improvements in their balance after the program. Next, the researchers explored how “functional connectivity” – the connections between different areas of the brain measured using neuroimaging – changed after the 12 weeks, compared to before engaging in the program. They found increased connectivity in several areas of the brain including the cerebellum which controls bodily movement, providing evidence of neuroplasticity that improved function. This was especially strong in people who had benefited most from the program. 

High Intensity Exercise Stimulates Muscle-Building Cells
A team from Denmark and Belgium led by Dr. Ulrik Dalgas (Aarhus University) noted that people with MS tend to lose muscle mass and that they have fewer “myogenic stem cells” – cells in the body that help rebuild muscle. The team reported that after a 12-week, high-intensity training program (involving exercise machines for strengthening upper and lower body muscles), myogenic stem cells increased by 165% in people with MS. This kind of exercise program may not be for everyone affected by MS, but it’s encouraging to know that such regrowth is possible.

Biology of Depression in MS
Dr. Nancy Sicotte (Cedars-Sinai Medical Center, Los Angeles) and an international team used brain imaging to examine the biological basis of major depressive disorder in people with and without MS. Previous research suggests that depression is common in people with MS and can occur in association with cognitive impairment, and these problems have been linked to shrinkage of the hippocampus, a part of the brain involved in memory. In this study, the investigators found that people with MS and depression had more cognitive impairment and hippocampal shrinkage, than those with non-MS depression. However, those with MS depression also shared some features with those who have non-MS depression, suggesting that there may be some similarities between major depression in MS and non-MS depression, with possibly different biological underpinnings. More analysis of this study is ongoing. 

Creating impact

Research is changing lives. With your support, people affected by MS are being connected to the solutions they need to live their best lives and are more hopeful than ever before about the future. Take a look at some of the lives, you’ve helped to change.

Melissa Martin

Melissa Martin, diagnosed in 2009 Melissa Martin can personally attest to the incredible impact that MS research can have on a person’s life. Diagnosed in 2009 with secondary-progressive multiple sclerosis, Martin joined a double-blind clinical study co-funded by the National MS Society and the National Institutes of Health for a promising new medication in 2014. “My hopes weren’try high that the study would do anything for my symptoms,” says Martin, whose mobility issues and fatigue became so severe that she had to leave her home and husband to live with her parents. “Mainly what I was hoping for was that the research could be used to help other people,” she says. But to her surprise, the research had a personal impact. “Now, I can do everything but drive. And I’ve moved back home with my husband.” While not every study has such a dramatic personal effect, many lead to a deeper understanding of the disease and make progress toward stopping MS in its tracks, restoring function and ending MS forever.

Nancy Speer

Nancy Speer and Ray Anderson Incredible research advances have changed the landscape of MS treatments and strategies for living one’s best life. Nancy Speer, diagnosed with MS before the first disease-modifying therapies (DMTs) were introduced, remembers, “for the first five or six years after my diagnosis, there wasn’t any kind of treatment.” “The only thing my doctors could recommend was a vitamin and mineral regimen.” When DMTs became available, Speer was ecstatic. However, she found that the side effects that she experienced were a major drawback. But over the past five years, new infusion-based and oral MS medications became available, making a major difference in Speer’s life. “It’s absolutely amazing,” she says. So, she and her husband Ray Anderson are devoted to ensuring that other people with MS will benefit from research as much as she has.

Lisa Sailor

Lisa Sailor, diagnosed in 1988 Lisa Sailor was diagnosed with MS in 1993 after a severe exacerbation left her using a wheelchair. As a mother of three young children, Lisa was devastated that MS had taken her mobility. “I still get choked up when I think about the day I realized I was going to have to raise my children from a wheelchair”. It was only after Lisa’s husband Mike participated in Houston’s version of Bike MS, the BP MS 150, did Lisa and her family discover the connections, support and hope the MS movement could provide.

Lisa’s passion and commitment to speaking about and raising funds for research fuels her hope for the future. “One thing I like about the NOW campaign,” says Lisa, “is that it helps people like me who live with a progressive form of MS. It’s exciting to live in this time because I think we will soon see some major breakthroughs in MS research. There’s hope on the horizon and that in itself is huge.”

Click here to read more personal stories of research impact.  

Collaborative team wins the 2015 Barancik Prize

(Left to right: Timothy Coetzee, Chief Advocacy, Services and Research Officer, Dr. Peter Calabresi, Dr. Laura Balcer, Dr. Elliot Frohman, Cyndi Zagieboylo, Society President and CEO)
Left to right: Timothy Coetzee, Chief Advocacy, Services and Research Officer, Dr. Peter Calabresi, Dr. Laura Balcer, Dr. Elliot Frohman, Cyndi Zagieboylo, Society President and CEO

The collaborative team of Drs. Laura Balcer, Peter Calabresi and Elliot Frohman have been selected as the winners of the 2015 Barancik Prize for Innovation in MS Research.  This team of physician-scientists have worked together for almost 10 years to produce novel, ground-breaking and impactful research about the anatomy and biology of the retina and other structures of the eye in people with multiple sclerosis. In their more than 50 publications, the team has literally “written the book” when it comes to applying optical coherence tomography (OCT), a common and easy-to-use eye scanning technique, to study MS.

Thanks in large part to this team’s efforts, OCT has transitioned from a tool for ophthalmologists who treat glaucoma patients to a mainstream tool used to study disease mechanisms underlying MS in particular.  Research led by this group has shown that OCT can identify unsuspected damage in nerve fibers at the back of the eye, and that this damage echoes more global damage in the brain during the course of MS, making it an invaluable tool for measuring the success of treatments in the clinic and during clinical trials of new therapies.

This trio of researchers leading the International MS Visual Consortium has established OCT as an accessible and critical tool in clinical care and clinical trials, thereby developing a new biomarker of the disease process. Numerous trials of potential disease-modifying therapies now incorporate OCT measurement into outcomes, and ongoing and new studies of novel neuroprotection agents have highlighted the use of OCT as a robust “surrogate” or indirect measure of nerve fiber health and damage.

The researchers have also demonstrated leadership in proving to the research world the value of selfless collaboration.  Even within what remains a highly competitive environment for research globally, data sets are shared openly by the group, protocols are exchanged, funding is shared, and papers are written by the principal investigators and their respective teams. The result has been one of the strongest databases in MS history, including longitudinal data, a robust publication record and, perhaps most importantly, a legacy of enthusiastic trainees who love MS research.
“We’re thrilled to present the 2015 Barancik Prize to Drs. Balcer, Calabresi and Frohman,” said Dr. Timothy Coetzee, Chief Advocacy, Services and Research Officer at the Society. “This team has used innovative research on the eye to open up a window to brain health and damage, making it possible to apply widely available tools to track clinical care and clinical trial outcomes in people with MS, while offering novel insights into pathology of the disease.”

Becoming part of the solution

Left to right: Eli Rubenstein, National Board Chair, Bill Monahan, Cyndi Zagieboylo, Society President and CEO

Multiple sclerosis became personal for Bill Monahan 15 years ago, when his son, Bill Jr., was diagnosed with the disease. It was the last thing Bill expected would happen to his son, who had only recently graduated from college.

Anxious to help his child, Bill immersed himself in research about the disease. He and his family were living in Minnesota at the time, and he got involved in the National MS Society locally. After he moved to Philadelphia, Bill continued his involvement and also was elected to the national board.

Meanwhile, Bill Jr. began taking MS medications. “He’s been very fortunate,” Bill says. “His drug therapy has worked extremely well. He has had some episodes, but they’ve decreased in frequency over the years.” 

After a decade and a half of watching his son live—and thrive—with MS, Bill has concluded there are two key factors that not only aid people with MS, but also their loved ones. “The first is the services that help people with MS have a better quality of life. The second is research to hopefully cure the disease or find a way it can be reversed,” he says.

“We at the Society use the motto of stop, restore, end. And that’s really what it is—being able to stop the disease from progressing, doing research on things like myelin repair to restore function, and ending this disease once and for all.”

Bill believes the best way to accomplish this is through donations to support the comprehensive work of the Society, including research initiatives like the Society’s NOW Campaign. Bill was recently awarded the Society’s 2015 Philanthropist of the Year Award and for the last five years, he’s been the chair of the NOW MS Research Campaign Cabinet— a group of volunteer leaders committed to raising funds and sharing their enthusiasm for MS research.

“Everyone in the Cabinet is impacted by the disease, and we’re motivated to help find a cure,” he says. “We do a lot of meeting with individual donors, and have found that the biggest issue in fighting the disease is communicating about it. When we make the effort to reach out and touch people, we often find that they have an uncle, an aunt, a sibling, a friend—somebody they’re close to who’s living with MS. And that brings them into the battle, so to speak. It’s amazing how many people are affected by MS.”

Bill Jr. is also involved in MS fundraising, as a Walk MS team sponsor and organizer. Bill shares his son’s story with potential donors, and points out that Bill Jr. owes much of his quality of life to advances in MS research. 

“Over the last five to 10 years, the rapid pace of research breakthroughs has been phenomenal, particularly with neuroprotection research and myelin repair,” he says. “I urge people to become part of the solution by donating to further our momentum. I’ve found that most people, particularly those who have been affected by MS, step up when they know there’s hope for a better future.”

Bill also emphasizes the bottom line when it comes to research. “I tell them that the Society’s investment in research has jumped from $20 million a year to now over $50 million a year. People get motivated by that, and they want to be a part of that solution.”  

Special thanks

Together as donors, fundraisers, activists, volunteers and people affected by MS, we have joined together to create impact in the lives of people with MS by accelerating MS research progress.

The Society is grateful to the following leaders who’ve helped to pave the way for our shared success.

The NOW Campaign Cabinet

Current members Robin McGraw, Bill Monahan, EJ Levy and Dana Foote receiving recognition at the 2015 Society Leadership Conference
Current members Robin McGraw, Bill Monahan, EJ Levy and Dana Foote receiving recognition at the 2015 Society Leadership Conference

Current and Past NOW Cabinet Members

  • William Monahan, Chair
  • Elissa “EJ” Levy
  • Robin McGraw
  • Jamey Power
  • Dana Foote
  • Ron Schram
  • Dean Munger (past)
  • Kim Phillips (past)
  • Liliane Haub (past)
  • Bill Gautreaux (past)
  • Gail Williamson (past)
  • Bonnie Eisler (past)

NOW Campaign Donors

The Society is grateful for the generosity of those individuals giving $250,000 or more over the course of the NOW Campaign.