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Breakthrough MS Quarterly Update

Summer 2017


In this article

First-Ever Primary Progressive MS Therapy Approved

This spring, the Food and Drug Administration (FDA) approved Ocrevus™ (ocrelizumab - Genentech, a member of the Roche Group) for use in the treatment of primary progressive and relapsing multiple sclerosis, making it the first therapy for primary progressive MS. This game-changing advancement was made possible, in part, by the critical support of National MS Society supporters like you, committed to fueling critical research breakthroughs.

The approval of this therapy helps people with MS realize personal breakthroughs in their lives—breakthroughs like reducing worries about the future and providing real hope that more solutions will soon follow. For many, this treatment—and the future treatments made possible by research—could preserve the ability to remain active and live one’s best life. “We are grateful that there is finally a disease-modifying treatment for people with primary progressive MS, and an important new option for people with relapsing MS,” said Bruce Bebo, PhD, Executive Vice President of Research at the National MS Society. “We hope this is just the first of many new treatments approved for people with progressive MS.”

Ocrevus works by reducing the number of immune cells called B cells circulating in a person’s blood. B cells have several functions including making antibodies, and they are believed to play a role in the damage to brain and spinal cord tissues that the immune system causes in MS. The Society’s direct investments in basic research of B cells, and career support of the lead investigators involved, laid the foundation for this game-changing advancement. Additionally, the persistence of MS activists over the years in successfully increasing vital federal funding for foundational MS research through the National Institutes of Health (NIH) and for the important work of the FDA, was also critical to the development and approval of Ocrevus. Today, the Society continues to fund important research to learn more about how B cells may contribute to progression — to accelerate even more solutions.
To learn more about Ocrevus and for advice on talking to your healthcare provider about this treatment, visit the Society’s website to view a special Ocrevus FAQ Guide.

All Roads Advance Breakthroughs

The recent announcement of Ocrevus clearly illustrates the Society’s critical role, and the importance your giving makes, in accelerating breakthroughs that change the lives of people with MS. In fact, the story of Ocrevus illustrates just how vital it is for all facets of the Society’s work to advance together to create impact.  
On the research front, the Society’s early investments in exploratory studies and a clinical trial showed that B cells are involved in MS and that targeting those cells could change the disease course.  That foundational research, as well as our ongoing career support of the investigators Dr. Anne Cross and Dr. Steve Hauser who were pivotal to uncovering B cells’ importance and advancing this treatment to commercial development, provided the launching point for Genentech to develop Ocrevus as the very first treatment for primary progressive MS (PPMS).
The Society’s critical advocacy initiatives ushered the way for Ocrevus by securing significant funding for MS research through the NIH and Congressionally Directed Medical Research Program over the years, and by advancing the important work of the FDA. As the first-to-market PPMS treatment, Genentech priced Ocrevus nearly 20 percent below the current market average for an MS treatment, a testament to the influence MS activists have made on the pharmaceutical industry and government to ensure people with MS have access to affordable healthcare and medications needed to live their best lives.
At the Society, we develop and maintain comprehensive information about Ocrevus and all other approved therapies, as well as MS research and community resources so we can be a trusted partner for people affected by MS as they make healthcare and other decisions. One way we accomplish this work is through our network of MS Navigators: highly trained, empathic and supportive professionals who recognize that each person has unique circumstances of MS and life, so each person needs personal solutions.
We know there isn’t a one-size fits all solution to breaking through MS. Each person affected by this disease experiences unique challenges that require a combination of large-scale breakthroughs, like Ocrevus, and personal breakthroughs, like most effectively managing fatigue or pain, to ensure each person can move life forward. Your gift to Breakthrough MS advances this multi-faceted approach, ensuring all people affected by MS have what they need to truly live their best lives. Thank you.
Yours truly,

Cyndi Zagieboylo, President & CEO
Cyndi Zagieboylo
Cyndi Zagieboylo
President & CEO

Clinical Trial of Cholesterol Lowering Drug Adds Additional Treatment to the Progressive MS Pipeline

A phase 3 trial with more than 1,000 people with MS will investigate whether simvastatin, an inexpensive cholesterol lowering drug, could become a treatment for people with secondary progressive MS. The British trial will cost almost $7 million and is being funded by a collaboration of the National MS Society (U.S.), the MS Society (U.K.), the National Institute for Health Research (U.K.), the National Health Service (U.K.) and U.K. universities.
The research will be led by Dr. Jeremy Chataway, University College London Institute of Neurology, who led the phase 2 trial of simvastatin, published in 2014, which found that those taking high doses of the drug had a significant reduction in the rate of brain atrophy (shrinkage), reduced disability and improved quality of life  at the end of the study.
“This drug holds incredible promise for the thousands of people living with secondary progressive MS … who currently have few options for treatments that have an effect on disability,” said Chataway. Learn more in a video featuring Dr. Chataway.
Image courtesy of MS Society of the UK, @mssocietyuk

Gaining Resilience: Telling the Stories of People with MS

People with multiple sclerosis may find that the physical, psychological and spiritual challenges of living with the disease can be overwhelming. However, many people living with chronic diseases, including MS, have learned that practicing behaviors that promote resilience is the secret to not just coping with the disease, but thriving with it. Resilience helps create a mindset of growth and opportunities, of seeing obstacles as challenges rather than threats.

“Staying positive is a decision, and that takes perseverance when facing challenges.”
- Rebecca

The Society recognized the importance resilience plays on living one’s best life with MS and as a result, developed a program with donor and partner support to address this critical need. The components of this multi-faceted program Resilience: Addressing the Challenges of MS include the following resources which are available through the Society, including print materials, online publications and resources, and in-person programming.

The program brings together experts in the field as well as the personal stories of people with MS—stories of people like Dawnia Baynes who hosted a dinner party celebrating the 10th anniversary of her MS diagnosis.
Baynes and her friends didn’t focus on her MS-related vertigo or the constant numbness and tingling in her feet and hands. Nor did they dwell on the balance issues that require her to use a cane or walker, or the numbness she experiences from her chest to her ankles. Instead, they spent the evening commemorating the resilience she’s developed in the decade since her diagnosis.

“I actually believe I’ve gotten stronger,” Baynes says. “My diagnosis made me realize I can’t just sit back and let life happen to me; I need to make the effort to do things to help myself.”

It's stories like these, told through the Resilience program and as a reaction to it, that continue to reach more and more people with MS every day and help them build their own resilience.

“I really needed this today. I was feeling sorry for myself. This story has inspired me to be grateful for things I CAN do instead of crying about things I can’t.”
- Mary

Some people may be more naturally resilient than others, but resilience is a skill that can be learned—and one can maximize results by following proven procedures. That’s where the program’s practical strategies for developing greater resilience come in.

“Resilience is not the absence of ever feeling sad or lost or angry,” says Dawn Ehde, PhD, a professor of rehabilitation medicine at the University of Washington. Instead, it’s the ability to not dwell on those feelings and to find a way to move forward. 

“To see you happy and living life against incredible challenges give me hope where very little else has.”
- Debbie

Finding resilience in the face of adversity can be a life-changing breakthrough for people affected by MS. Your support of the Society continues to advance comprehensive solutions, including our Resilience program, that help people achieve the personal breakthroughs they need to live their best lives with MS. 

“The way you enjoy your life considering your obvious difficulties, and enjoy life so much, is a fantastic example. I fight and laugh with you, Michael!”
- Mike 

Funding the Breakthroughs of the Future

Patti Hinzman, diagnosed in 2004
Greg and Kathy Moore
Diagnosed in 1983
“In hindsight, I remember that Kathy got overheated easily; even on our honeymoon she couldn’t play tennis for very long,” says Greg Moore, recalling the years before his wife’s diagnosis with MS in the early 80s. 

Kathy, whom Greg describes as a “very private woman,” kept quiet about her diagnosis, even keeping the news from their children for many years. But she kept going and staying active. Greg traveled often for his job as a vice president with Taco Bell, and eventually chief accounting officer at Yum! Brands, and says, “Kathy raised the kids and worked in the local school district’s grant program.” The couple enjoyed traveling and adventures; the photos displayed around their home tell the story of the full life they have had together.

Fast forward to 2009: Kathy no longer took escalators because her balance felt ‘off.’ Soon she was uncomfortable—and stopped—driving. After suddenly finding herself unable to stand in the shower, Kathy spent weeks at Mayo Clinic and received a diagnosis of secondary progressive MS, with no treatment recommendations available.  Since then, Kathy’s MS has advanced.

“She was an independent person her whole life. I feel very lucky to have her partnership, love and loyalty all these years,” Greg says. Though Kathy is now fully reliant on a wheelchair and unable to attend to her own basic needs, Greg hopes to keep her living at home with the help of full-time caregivers. With those caregivers, the pair also continues to travel to spend time with family. Greg says that Kathy recognizes family and is still able to speak at times.

For many years, the couple has relished support and connection with others through a local National MS Society support group called “MS with Christ.” Greg and Kathy also attended a Society symposium to learn more about research advances. In 2016, they joined a meeting of the International Progressive MS Alliance Scientific in San Francisco, where Greg found hope in “some of the smartest people in the world” focused on progressive MS.

Greg realized that he was looking for the right opportunity to do something special for Kathy and turned to the Society to help uncover a meaningful opportunity to “honor and recognize what Kathy’s been through.” After collaborative brainstorming and discussions with the Society, it was decided. At the annual party for MS with Christ—a dinner for 30 families hosted at the Moore home—Greg announced his three-year pledge to the Society for the Kathleen C. Moore Postdoctoral Fellowship, totaling $171,000, and promised that he intended to fund other young scientific investigators interested in pursuing a career in MS research. 

“I consider us very lucky people,” says Greg. “Nearly 44 years of marriage. Blessed with [two] kids and [five] grandkids who do well. After Kathy and I are gone, I want our legacy to continue.” Funding for the fellowship is provided through the family foundation Greg created—the multi-million-dollar Kathleen C. Moore Private Foundation—with the intention to provide significant funding to the Society’s research initiatives for decades to come.
“Ninety-nine percent of the money I give away, I give to the National MS Society.
The money we provide may not impact Kathy’s future, but hopefully if your child or grandchild is headed there, we can stop it. That’s really the goal.”