Quarterly Update

“I look for participation in organizations where I can make a difference. I don’t want to just give my money, it’s not what I want to do, I want to make a difference,” says Edward M. Dowd, a successful philanthropist and financier. His recent $3 million multi-year gift is the largest outright gift ever received by the Society from an individual donor. It will not only make a difference in how people manage the challenges of multiple sclerosis, but also ensure that people have access to what they need to realize life-changing breakthroughs.

Edward M. Dowd

Dowd’s transformative gift, inspired by his own personal journey with MS, makes it possible for the Society to substantially expand its services for people living with MS through the establishment of
The Edward M. Dowd Personal Advocate Program. This program will ensure that personalized case management will be consistently available to those needing more in-depth services and support- regardless of where they may live.

“I want everybody to have the same enjoyment of life that I have”, says Dowd who was diagnosed in 1993 and relies on a team of caregivers to thrive with his MS, “But they need that safety net, they need somebody to hold their hand and guide them”.

For too many people living with MS, significant challenges and roadblocks prevent them from living their best lives. Disease progression, employment issues, social and environmental factors, family issues and more, can present seemingly insurmountable obstacles.

The Edward M. Dowd Personal Advocate Program will greatly expand the Society’s nationwide network of trained case managers who are knowledgeable about MS and who can provide the levelA of support necessary for navigating, and overcoming the complex challenges of MS and helping people get what they need.

“I realize the value of services for people with limitations. I have help navigating life with MS, but I often wonder how people without sufficient resources manage even the day-to-day tasks,” says Dowd. “My overall focus is to help improve the quality of life for people with MS who do not have the financial means to get the support they need.”

“This life-changing gift will accelerate the collective and individual ability of people affected by MS to live their best lives — connected, solution-focused, and resilient,” said the Society’s President and CEO Cyndi Zagieboylo. “People affected by MS have a supportive partner in the Society to access the information and resources they need to connect to solutions and realize life-changing breakthroughs.”

Through the development of the Society’s current strategic plan, we talked with thousands of people affected by MS and asked them what they needed to live their best lives both today and in the future.

As you can imagine, responses covered a wide-spectrum of solutions, but one thing was resoundingly clear: people affected by MS are relying on the National MS Society to do whatever it takes to accelerate breakthroughs — all types of breakthroughs. Some spoke of breakthroughs in the development of new and better treatments impacting everyone with MS, and others referenced breakthroughs that will remove barriers and ensure access to those lifechanging treatments.

People expressed the need for breakthroughs in comprehensive support necessary to navigate the challenges of MS, highlighting the importance of our newly established Edward M. Dowd Personal Advocate Program. The need for breakthroughs in information and resources on diet and exercise to make informed, individual choices on wellness was also shared by many.

And finally, people articulated the need for breakthroughs of all kinds that would provide hope and confidence towards realizing our shared vision of a world free of MS.

What we learned from this significant outreach, and what is now reflected in our bold strategic plan, is that in order to create transformative impact in the lives of people affected by MS, we must advance all of the Society’s work — research, services, advocacy and awareness — and we must do it together.

In this issue of our Quarterly Update, you’ll learn how donors, researchers, advocates, and people affected by MS are working together to do whatever it takes to change the world for people with MS.

As you know, there is great urgency in our work to accelerate breakthroughs and change lives. As the Society embraces this comprehensive approach to creating impact, I urge you to do the same. Consider the many ways you can do “whatever it takes” to move us closer to a world free of MS.

Cyndi Zagieboylo
President & CEO

While researchers are working to identify new and better strategies to stop MS, restore what has been lost and end MS forever, people whose MS has become more disabling need information right now about how to navigate the immediate challenges they face. With these goals in mind, the National MS Society recently convened a group of key stakeholders – including people with MS, support partners, and medical experts from an array of fields– to help inform the Society’s role in finding solutions for individuals and families who are facing advanced care needs.

“At the Society, when we face a challenge, we get the brightest minds together and put the problems on the table,” said Cyndi Zagieboylo, President and CEO of the National MS Society. “We need to pursue every opportunity to support people with advanced MS in living their best lives.”

Through this two-day meeting, people living with advanced MS described the many and varied challenges they face daily including mobility, breathing problems, swallowing, speech, bowel and bladder issues, cognition and mood problems.

Through in-depth discussion, participants identified gaps in Society information and services, suggested research priorities, and identified collaborative strategies to address the educational needs of neurology and primary care providers in supporting people living with advanced MS and their families.

Next Steps
The Society is currently considering and prioritizing the meeting recommendations to ensure that through our comprehensive work, we can make the greatest possible impact on people affected by advanced MS. A white paper describing the meeting’s discussion highlights and recommendations regarding the Society’s response is now available on the Society’s website at ntl.ms/advancedmsneeds.

To find out how to support this critical work and address the needs that are so immediate to those living with advanced MS, please contact Mary Milgrom at mary.milgrom@nmss.org.

With advice and guidance from the National MS Society, The Patient-Centered Outcomes Research Institute (PCORI) recently approved nearly $20 million to fund four comparative clinical effectiveness studies that will assess several therapies used to treat MS and address the symptoms of MS.

PCORI, a non-profit organization developed to fund patient-centered comparative clinical effectiveness research, has a congressional mandate to invest in research to help people choose between available therapies for many different disorders. Key conversations between Society and PCORI leadership helped steer the focus toward critical questions around treatment choices for people with multiple sclerosis. Results of these studies will help give people with MS the evidence they need to make the most appropriate treatment choices based on their unique needs.

The new studies, including those assessing disease modifying therapies, fatigue medications and evaluating exercise-based rehabilitation approaches, address evidence gaps and questions that people with MS and other healthcare stakeholders identified as their top priorities.

To learn more about the focus of the PCORI, visit our Regulatory Support of Research page.

Harvard researchers found significant differences between the gut bacteria of people with MS and those without MS, and also between treated and untreated people with MS. The differences included increases in bacteria associated with inflammation in people with MS, and suggestions that treatment may help “normalize” some of the MS-related changes seen in gut bacteria.

Investigators used advanced genetic tools to look at gut bacteria (“microbiome”) in fecal samples from 60 people with MS and 43 people without MS. In the group with MS, 32 were “treated,” with a disease-modifying therapy and 28 were not.

This study, funded in part by the Society, adds to growing evidence of the possible influence of gut bacteria on immune activity. Further study is needed to determine whether alterations in the gut microbiome play a role in MS disease activity, or are a consequence of it. As a next step, the Society is funding The MS Microbiome Consortium, a comprehensive analysis of gut bacteria in people with MS to determine factors that may drive progression and to develop probiotic strategies for stopping progression.

Although research continues to uncover new insights into the underlying causes and pathways for treating progressive disease, for Cathy Onufrychuk and many others living with progressive MS, progress is not moving fast enough. “I’m encouraged by recent research progress, but it feels too slow. I know we are moving toward answers, but selfishly I want these things now,” says Cathy. She and her husband Bill have recently channeled their frustration into action and are fueling progress through their leadership of a new membership group: the National MS Society’s Progressive MS Research Champions.

Cathy Onufrychuk

“Research progress requires talented scientists, a few whom I have been fortunate enough to meet, and I am convinced of their talent, imagination and commitment. Our future depends on them but it’s up to us to provide the funding.”

Fueling the Onufrychuk’s vision for accelerated progress, The Progressive MS Research Champions group brings together donors who share this vision for delivering answers and solutions to progressive MS while inspiring and challenging others to do the same through giving.

“Research is vital to improving the lives of people living with MS, and Bill and I are dedicated to speeding the pace of discovery”, says Cathy. Now is the time to be bold and take action. We made our gift to progressive MS research and now we are challenging others to do the same. It is a privilege to give so scientists can advance discoveries that will change the world for people with MS.”

Those who contribute $25,000 or more by December 31, 2016 will establish themselves as Founding Progressive MS Research Champions and will be afforded special benefits and recognition. The group’s goal is to recruit 40 Founding Champions, each of whom will advance progress by giving and sharing news of progressive MS research.

“With the Society’s robust portfolio of progressive MS research accompanied by its leadership of the International Progressive MS Alliance, there has never been a more promising time for breakthroughs,” says Cathy.

To learn more about the Progressive MS Research Champions, and to join others who are deeply committed to speeding solutions for people living with progressive MS, contact Mary Milgrom at mary.milgrom@nmss.org. 

Featured Engagement Opportunity
Witness how the Society works to shape the MS research landscape by participating in the Society’s next Research Programs Advisory Committee Meeting (RPAC) taking place February 1–2, 2017 in Los Angeles, CA.

Contact Jessica Bean at jessica.bean@nmss.org or 303-698-6100, ext. 14266 to learn more about this exclusive opportunity.