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Breakthrough MS Quarterly Update

Spring 2018

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$3-Million Gift Will Help People Navigate the Challenges of MS

Jim & Kathleen Skinner
Jim & Kathleen Skinner

Just as multiple sclerosis is different for every person, the challenges of living with MS are equally diverse and complex. It's important that people affected by MS can rely on the National Multiple Sclerosis Society as a supportive partner in navigating these challenges. Jim Skinner, former CEO of McDonald's Corporation, has given a transformational gift of $3 million to the Society's MS Navigator® program to ensure people with Ms have what they need to live their best lives.

The MS Navigator program is a nationwide network of trusted Society professionals that help people with MS navigate the complex challenges they face daily.

When Jim's wife, Kathleen, was diagnosed with MS in 2009, he recalls the diagnosis as "not being that scary" because the family had inroads to top neurologists. "There were no 'aha' moments regarding Kathleen's MS. You know what you know today, but you may be surprised tomorrow," Jim continues. "That's why I'm willing to support the Navigator program. Because I know there are so many people who don't have access to support that we have."

People like Jackie, who—by the time she contacted an MS Navigator—had lost her Medicaid benefits, home-care services, and even her electricity. Jackie was homebound, unable to get to the grocery store or medical appointments. In addition, she couldn't replace her power chair battery and she did not have a ramp to get in or out of her home. The last few years had been so rough financially that she often had to decide between food or paying the energy bill. She was struggling to take care of these issues mostly on her own.

Upon understanding Jackie's situation, the MS Navigator immediately requested a wellness check from the local police department and got her power turned back on. The Navigator got Medicaid benefits reinstated to ensure Jackie had appropriate care, helped her apply for a home delivery food service, and connected Jackie to community organizations who built her a ramp so she can get in and out of her home safely.

Jackie attributes her survival of this harrowing time to the generosity of several "angels" including her next-door neighbor who encouraged her to call the Society, and her MS Navigator who she says turned her life around. Jackie says, "I had fallen into a hole and I wasn't sure I was going to get out of it. When I called the National MS Society, it changed my life. I felt hope again."

Jim and Kathleen Skinner understand the value of expert health care and support, as well as knowing about treatment options and where to find resources. Now, through their contribution, Jim and Kathleen are supporting this access for families affected by MS across the country. Jim hopes the gift will inspire others to give at a high level, saying "don't wait for them to ask. You can make an enormous difference and impact people's lives with your support."

Transformational gifts like Jim and Kathleen Skinner's change the lives of people with MS, like Jackie, every day. Their gift, and yours, will help realize the Society's vision for widespread impact on the lives of every person affected by MS—no matter where they are, no matter the problems they face.

Whatever It Takes to Change the World

The power of the MS movement comes from all of us – every person who strives toward a world free of MS. For our movement to thrive, we must keep MS and the challenges faced by those affected with it, in the forefront of everything we do. Our mission and vision drive our work every day, and we know that your passion for this movement drives you to give so generously.

Research breakthroughs like the ones being discovered by the winner of the Barancik Prize, Prof. Robin Franklin, are a critical piece of the Society's work. However, the breadth and scope of our work is much deeper. A new treatment that comes to market is only valuable if people can access it. They need to see a health care provider to prescribe it, have insurance to help pay for it, and an affordable monthly cost so they can continue to take it.

We must understand the challenges of living with MS every day, so that we can be the organization people need us to be. People affected by MS tell us that awareness is critically important, because awareness fosters the understanding and empathy in those around us which is necessary to achieving a high quality of life.

The Society's focus on awareness means that more people with MS have amplified voices in our government and in the world. More professionals choose MS research or specialty clinical care as their calling so that people with MS receive effective care and treatment. More businesses, community leaders and community members join the MS movement and raise vital funds.

Most importantly, awareness means more people who are diagnosed with MS connect with the Society to find what they need and know that the Society is a supportive partner to turn to throughout their journey of living with MS. Awareness ensures that, together, we will do whatever it takes to achieve our vision of a world free of MS.

Your support fuels awareness. Thank you for all that you do to help us change the world for people with MS.

Yours truly,

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

Expanding MS Awareness to Change Lives

Driving awareness of multiple sclerosis is a year-round focus of the Society kicking off during MS Awareness Week in March. To realize our vision of a world free of MS and to connect with as many people as we can, we must help people better understand MS and the experience of living with it. Not only does it help raise critical funds to drive breakthroughs, but it also is a part of what we do every day to help people with MS live their best lives.

In 2017, the National MS Society asked over 3000 people living with MS and their loved ones to share the ways in which the Society can help improve their quality of life so we could better understand what Society activities are most impactful to changing lives. In the survey, we asked people affected by MS to tell us: aside from not having MS at all, what is the one thing that would help you most in overcoming the challenges of MS? Answers spanned across many areas of the Society's important work, from access to affordable health care, to employment assistance, research and symptom management. Importantly, people with MS shared that greater awareness of MS, and a better understanding of the experience of living with it, among their community, family, and peers, significantly contributes to a better quality of life.

Increasing awareness of MS changes lives. People with MS are asking for:

  • "People being more educated on what MS is, so I don't have to keep explaining, correcting, and reassuring when the topic comes up."
  • "More understanding and public awareness about the challenges people with MS have. People often say 'you look great' but I don't always feel great because many of my symptoms can't be seen"
  • "Better understanding in the work place, county government, federal government and world of the disease."
  • "Other people knowing that while MS can be very hard, it does not have to make the person with it either a victim or an invalid."

The National MS Society's newest awareness campaign, launched during MS Awareness week on March 11-17, 2018, shares the stories of people with MS doing whatever it takes to move their lives forward. In their own words, people living with MS share their unique experiences and how they refuse to let MS define them.

Multiple sclerosis may be a part of who you are, but it doesn’t define you.
– Clarisa, diagnosed in 2006
Yvette's Story – #ThisIsMS Kevin's Story – #ThisIsMS

Every day, people do whatever it takes to move their lives forward despite MS.

Explore their stories and others' at nationalMSsociety.org/ThisIsMS
and share to show the world #ThisIsMS

On the Forefront of Innovation in MS Research

Robin Franklin, PhD, a leading scientist at the University of Cambridge, UK, is the winner of the Society's 2017 Barancik Prize for Innovation in MS Research for his work on myelin repair. Established in 2013 by the Charles and Margery Barancik Foundation, the Barancik Prize recognizes an exceptional scientist or a team of scientists whose work in MS research has demonstrated outstanding innovation and originality, with emphasis on impact and potential of the research to lead to pathways for the treatment and cure for MS, and scientific accomplishments that merit recognition as a future leader in MS research. It's one of many ways that the Society fosters and funds projects that revolutionize the field of MS research and lead to discoveries that otherwise may not be realized.

Prof. Franklin has pioneered work toward understanding how the myelin coating on nerve fibers (axons) regenerates by examining the aging process. Dr. Franklin's pivotal research has revealed clues to repairing myelin that has been damaged by MS and finding successful ways to repair and protect the nervous system and stop progression.

"I am absolutely delighted and deeply honored to have been chosen to receive the Barancik Prize," said Franklin. "I am interested in how tissues naturally regenerate, and identifying ways to stimulate those mechanisms to assist myelin regeneration in MS. This could both prevent further damage to axons and restore function, which would be particularly important for people living with progressive MS."

Prof. Franklin is a senior scientist at the Wellcome Trust-MRC Cambridge Stem Cell Institute and Director of the Cambridge MS Society Centre for Myelin Repair. He is a world leader in the biology of oligodendrocytes, which are the myelinating cells in the brain that are damaged in MS. His team pinpointed a key factor that stimulates myelin repair, which was the genesis of a clinical trial of a drug (bexarotene) already available for other conditions. His groundbreaking work revealed new clues to overcoming restrictions to repair that come with aging.

Uncovering the next major MS research breakthrough will only come through the relentless pursuit of new ideas and solutions to this complicated problem. Through the Barancik Prize, and with critical help from donors like you, the Society is a leader in driving innovation in the field of MS research that will one day end MS forever. Together, we speed MS research breakthroughs that will change the world for people with MS.

Learn More about Prof. Franklin's Prize-Winning Research

The length of time it takes for breakthroughs to occur must be a source of great frustration for people affected with MS; however, the work that we and others have done has made significant progress in last few years and we are now beginning to translate some of that information into the clinical trials. We have moved from a position of aspiration to a position of reality. – Prof. Robin Franklin

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