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Breakthrough MS Quarterly Update

Summer 2018

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Pilot Projects Focus on Cutting-edge MS Research

To support leading MS scientists in accelerating the pace of research breakthroughs, the Society committed $400,000 to fund 10 high-risk pilot grants with high reward potential for the MS community beginning March 1, 2018. This critical funding is one way the Society maintains a diverse research portfolio that includes short- and long-term investments, balances risks and rewards, and funds research globally to stop MS, restore lost function and end MS forever.

Through these Society pilot grants, scientists take calculated risks on promising, yet unproven, ideas. As with any risk, there is always something at stake, but the potential breakthroughs could be game-changing for people with MS.

As Robert Motl, PhD, associate director of research, UAB/Lakeshore Research Collaborative and one recent pilot grant recipient states: "These awards give researchers the confidence and courage to boldly step forward to detect new approaches that can really have demonstrable effects in the lives of people with MS."

New breakthroughs happen every day, driven by the hard work and innovative ideas of talented scientists in the field of MS research all over the world. But an idea can't become a breakthrough without the funding that supports the work. "Funding is an integral part of what we do every day," says Sergio Baranzini, an MS researcher and Professor of Neurology at the University of California, San Francisco. "We have ideas, we want to implement them, but funding is what really enables us to do what we hypothesize."

Securing that critical funding isn't easy in the highly competitive world of medical research. Granting bodies like the National Institutes of Health are inundated with pioneering research ideas and, because they want to minimize risk, they are more likely to fund studies where an investigator has a track record in MS research and usually require published data to support the study.

But what about brand new, innovative MS research ideas? How does an investigator just starting out, or someone who has a bold, cutting-edge idea, get the funding they need to test their hypothesis? This is why the Society funds pilot grants – so researchers can quickly test novel ideas and gather preliminary data, so they can fail quickly and move on to the next idea or show that their idea has promise to develop life-changing solutions and apply for longer-term funding.

Dr. Baranzini says, "Sometimes there are more ideas than funding available. The National MS Society fills a niche to fund great ideas that otherwise would never have been realized."

A recent survey of nearly 300 Society pilot grant recipients indicates that this program succeeds in bringing new ideas and new researchers to the field of MS research:

  • 85% of respondents report their pilot was a new idea
  • 45% of researchers were outside the MS field
  • 56% leveraged the pilot project to win larger grants
  • 90% agreed the funding was impactful to their research program

By supporting these exciting Society high-risk, high-reward opportunities, you can be a part of leading-edge breakthroughs in MS research.

Learn more about the pilot grants most recently awarded by the Society ›

Ground-breaking Approaches to Breakthroughs

With any complex problem, often the best way to find a solution is to think differently or to take a new approach. Solving the complex problems of MS and eventually ending it forever is no different. It takes steadfast support from donors like you to enable our innovative approaches to accelerate solutions for everyone affected by MS.

One great example of how important it is to think differently is last month's expanded approval by the FDA of the oral MS therapy, Gilenya®, for the treatment of children 10 years and older with relapsing MS, making it the first therapy approved for the treatment of pediatric multiple sclerosis. For more than a decade, the National MS Society has led the charge to create awareness that children get MS too – driving consistency around the diagnosis and care of children living with MS.

Our vision and early, fundamental work helped lay the groundwork for this important breakthrough. The Society launched what is now the U.S. Network of Pediatric MS Centers, a ground-breaking network that began with six, and now totaling seventeen, medical centers focusing on understanding and better treating this disease and providing infrastructure and centralized data collection to facilitate research studies, like the one that supported this first approved pediatric therapy.

The progress we've made for children with MS and everyone affected by MS wouldn't be possible without your partnership. Your critical support helps us pioneer new approaches that change lives.

We couldn't break this new ground without you.

Yours truly,

Cyndi Zagieboylo, President & CEO, National MS Society
Cyndi Zagieboylo
Cyndi Zagieboylo, President & CEO
National MS Society

Proactive Approach to Health Care Partnerships

Creating strong partnerships with MS specialists is part of the Society's comprehensive approach to ensure that high quality care, coverage and effective treatments are available to everyone living with MS, regardless of where they live.

We know that access to an MS specialist is very important in the lives of people with MS. To this end, the Society has made a concerted effort, to not only create and offer a wealth of information and support for people with MS and their providers, but to purposefully pursue and build strong relationships with MS specialty healthcare providers through the Partners in MS Care program.

Partners in MS Care are healthcare providers who have demonstrated knowledge and expertise in treating patients with MS. They include, but are not limited to, neurologists, physical therapists, social workers, neuro-ophthalmologists, urologists, and long-term care providers. They also include Centers for Comprehensive Care that provide coordinated multi-disciplinary MS health care.

The National MS Society builds and nurtures partnerships with these providers that helps connect their patients to the information, resources and support to live their best lives with MS.

There are 324 Partners in MS Care across the country.

Find Partners in MS Care

Access to High Quality MS Care Changes Lives

Rosanne Ross & Family
Rosanne Ross & Family

As an executive vice president with a Fortune 500 company and mother of three, Rosanne Ross was no stranger to overcoming challenges.

After optic neuritis led to her multiple sclerosis diagnosis in 1998, Rosanne put her can-do attitude to work. She was determined to find solutions that would help her manage her MS, while raising three boys and navigating frequent international work travel. Although she was being treated with a disease-modifying-therapy (DMT) by a neurologist, Rosanne's symptoms were becoming more debilitating.

"During one trip in the middle of the summer, it was hot. And I was visiting one city a day, staying in different hotels every night. By the last hotel, I was just exhausted," Rosanne says. "I went to check in around 4 pm. I went to the door of my room and the key didn't work. I kept going back to the front desk until finally the desk clerk came to help. I hadn't even realized it, but I was so tired I was swiping (the hotel key) like a credit card. I went in the room, closed the door and started crying."

Shortly after that incident, Rosanne had lunch with Patty Shepherd-Barnes, National MS Society, Greater Northwest President.

"I was very depressed about everything and concerned [about my MS]. Patty said, 'You need help, you're not in a great state.' Patty suggested maybe what I needed to do was see a neurologist who was more specialized in MS care, and she helped me set up an appointment with James Bowen, MD."

As a Society Partner in MS Care and with more than 30 years' experience treating MS patients, Dr. Bowen takes a holistic approach to care. He is the medical director of the MS Center at the Swedish Neuroscience Institute in Seattle, WA, one of the Society's recognized 138 Centers for Comprehensive Care that provide coordinated multi-disciplinary MS care.

"I think the specialists understand more than just the medical aspects of the disease – they've seen it all in terms of what happens to people with the disease," Rosanne says. "Not just medical issues but also some of the physical and mental ones that you encounter [living with MS], and they're able to walk you through that."

By thinking differently about her care and seeing a physician who specialized in MS, Rosanne was able to better manage her MS and improve her quality of life. Dr. Bowen helped her find an MS medication that worked better and also encouraged her to incorporate yoga to improve her balance and wellness. And he helps her keep things in perspective when it's hard. Rosanne says, "Every now and then, if I'm feeling sorry for myself, Dr. Bowen helps me see that I'm actually doing well."

Dr. Bowen says the Society plays a critical role in support of people living with MS and their healthcare team.

"The National MS Society is the best source for patients to get credible information about the disease. There is a lot of misinformation – especially nowadays with the internet," Dr. Bowen says. "The information the Society provides is very good. It's all vetted by MS experts."

Your generous giving ensures the Society will always be a trusted partner for health care professionals in providing up-to-date, comprehensive MS information and resources. People with MS can live their best lives when they have access to high quality health care, including comprehensive MS clinical care.

Foundation’s Enhanced Gift Will Drive MS Breakthroughs

Rosanne Ross & Family
Wayne & Debra Larsen

Through his trusteeship with the Ladish Company Foundation and his position on the Society's local board of trustees, Wayne Larsen has been helping improve not only the lives of people in Wisconsin, but the lives of everyone affected by multiple sclerosis, for over ten years. The foundation's most recent gift of $500,000 to fund three Society research projects in Wisconsin, is an example of his commitment, and the foundation's, to finding a cure for MS.

The Ladish Company Foundation was established in 1952 by the company's founders with a focus on education and healthcare – to improve the lives of people in Southeast Wisconsin. The foundation supports organizations like the National MS Society, that are national but demonstrate local impact. In fact, "the Society is one of the first charitable groups that the foundation ever gave a gift to," says Wayne, and though the amount and flavor of their support has changed over time, the Ladish Company Foundation has a long history of supporting the Society.

Ten years ago, Wayne and the foundation decided to start a scholarship program to support those pursuing a college education, but Wayne wanted to do even more. When the foundation began to shift its giving, putting a larger focus on research specifically for autoimmune diseases including a large gift to juvenile diabetes research, Wayne saw his chance to give back to the Society in a more substantial way.

When Wayne attended a recent meeting of the Society's Research Programs Advisory Committee (RPAC) in Miami, it gave him new insight and understanding into how the Society makes funding decisions to advance the most promising MS research. He was particularly impressed with the pilot program and the notion of supporting short term projects, often by younger researchers, to test revolutionary ideas. Wayne says, this program "promotes out of the box thinking, to encourage new ideas that can blossom into a bigger project and produce greater fruit down the road." In fact, the foundation included one of those pilot grants in their most recent gift.

Though Wayne lives with multiple sclerosis, he says that his MS isn't why the foundation supports the Society. The foundation was a supporter of MS long before Wayne became a trustee. Wayne says, "We encourage people to give to the National MS Society and join us in supporting research for diseases, like MS, where there is a reasonable likelihood that someone will make a major breakthrough and this disease will be eliminated."

"When people put enough resources and support behind things, there's answers out there."

—Wayne Larsen

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