Skip to navigation Skip to content

Breakthrough MS Quarterly Update

Spring 2020

Share

In this article

Paving Pathways to a Cure

We Could Be the Generation that Ends MS

Someday, when we have found a cure for MS, we will look back on this time as a key chapter in our movement’s history. Our progress and momentum are real, and our energy and optimism are contagious. It’s because of dedicated supporters like you that we are entering this new chapter of possibility and hope.
 
With your help, the National Multiple Sclerosis Society brings the MS movement together—and turns our power and passion into real results. We work together to ensure no one faces MS alone, to amplify the voices and needs of people affected by the disease, and to advance the research that matters most to people with MS by supporting the best ideas and seeking the most diverse perspectives.

Breakthrough ideas require breakthrough thinking and collaboration.

We uncover breakthrough ideas by bringing concepts and perspectives from other research and diseases into the MS body of knowledge and experience.  This was the goal of our Pathways to Cures think-tank meeting held in January. Over two days, people affected by MS and international scientific leaders from MS and other fields of disease, such as stroke and rheumatoid arthritis, met to share insights and ideas to innovate and gain international consensus around the critical components of  pathways to an MS cure: STOP MS (have no new disease activity), RESTORE LOST FUNCTION (repair and rehabilitate to improve quality of life) and END MS FOREVER (prevent MS by better understanding the risk factors and causes of the disease. The meeting uncovered gaps and barriers we might encounter, declared the milestones along these pathways that we can use to mark progress, and identified accelerators like technology that we’ll need to ensure we reach cures faster.
 
It will not only take those of us who represent the MS movement in the United States to uncover a cure, it will take great research minds across a host of disciplines around the globe. It will take all of us who represent the MS movement in the United States as well as great research minds across a host of disciplines around the globe and all perspectives of MS. It will take supporters, activists and leaders in every country voicing their needs and sharing their time, talent and treasure. You are part of a worldwide movement on the precipice of breakthroughs decades in the making.  We bring this movement together to speed breakthrough discoveries.

We’ve never been closer to a cure for MS.

With the continued support of our visionary donors, the next chapter of our story could very well be the last chapter for MS.

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

Advocacy Efforts Increase MS Research Funding

Every day in Washington D.C., and in state capitals across the country, lawmakers and officials are making decisions that shape what is possible for people with MS and their loved ones. By raising our voices together, we can collectively shape the decisions that impact us all.
 
Society activists remain focused on upholding disability rights and patient protections, promoting better access to affordable MS medications, securing funding for MS research, as well as teaming up with other nonprofits to drive funding and protect access to healthcare coverage.
 
The phenomenal work of MS activists throughout the past year has resulted in significant and life-changing increases for MS funding priorities, including:
 
  • $16 million designated for the MS Research Program through the Department of Defense (a $10 million increase from last year!)
  • $6.1 million to the Lifespan Respite Program to help maximize existing resources for MS and deliver quality respite services for caregivers (a $2 million increase from last year!)
  • 52 bills supported by MS Activists at the state level became law in 2019
  • $41.7 billion to the National Institutes of Health to fund biomedical research (a $2.6 billion increase from last year!)
With your continued investment, the Society can keep supporting the power and influence of people affected by MS in every state who raise their voices to create positive change.
 
In early March, the 2020 Public Policy Conference gathered hundreds of MS activists from across the country to visit legislators and advocate for policy priorities critical for everyone affected by MS.  We visited more than 300 offices and shared our stories about the importance of supporting four priorities.
 
Priority Impact for People with MS
Access to medications People with MS have the best treatment for their MS and they can afford it.
Surprise medical billing People do not receive unanticipated bills after inadvertently seeing a healthcare provider or receiving medical services deemed out-of-network by their health insurance
Emergency preparedness People with disabilities are part of emergency preparations at the local, state and national levels
Appropriations to support MS research Government funding for MS research will lead to breakthroughs and cures
 

Seth Morgan

“It’s exhilarating to be active on Capitol Hill and to see your actions come to fruition, to see the bipartisanship that is involved, the fact that people involved with passing legislation understand that it’s not a partisan issue, it is a person issue, it is a personal issue for people with neurological diseases.”

– Seth Morgan, MD, MS Activist
 

Through gatherings of MS activists, we are putting our faces, voices, and priorities in front of legislators and policymakers to make sure that the needs of people with MS are always part of the conversation.

Keeping Up the MS Fight in a Mother’s Memory

The Kenrose Kitchen Table Foundation Makes a Multi-Million Dollar Investment into MS Research and Services

"Research is ultimately going to solve the problem – eliminating the root cause, or how to best live with it so that MS has the minimum impact on someone’s life."

- Mr. Jamey Power, Kenrose Kitchen Table Foundation
Julie Power was a vivacious, strong-willed woman who raised four kids and supported the growth of an up-and-coming company with her husband, J. David Power. Ultimately, she became the matriarch of J.D. Power and Associates, a corporation that created a powerful way for industries to hear what customers felt about quality and customer service.
 
Julie was diagnosed with relapsing remitting MS in 1980 when she was 42 years old. At that time, the only treatment for MS was prednisone and rest. Eventually, relapses took more independence from her and she passed away suddenly in 2002.
 
This loss of their mother to MS left a profound impact on her family members and ultimately led them to support the MS movement.
 
When they sold their business in 2005, the Power family created the Kenrose Kitchen Table Foundation as a way to share their success philanthropically with causes that were important to them, including the National MS Society. Since that time, the Power family has made several multi-million transformational grants in support of MS research and services. The family has recently made their largest gift to date with an incredible $3.1 million investment to keep funding and attracting the best and brightest minds to the field of MS research. The cure for MS will come from the mind and work of a brilliant scientist. The Society has helped launch the careers of nearly 1000 fellows since this program launched.  The Power family is proud to support the fellowship awards for MS researchers and clinicians as well as funding support of the MS Navigator program with this current grant.
 

Julie Power with her granddaughter, Laura
“Rather than contributing to a specific MS research program, we decided that we’d have a bigger impact by making a grant to address the pipeline of talented MS research and clinical professionals,” says Jamey. “Let’s invest in making sure that we have the dedicated, talented people who are focused on MS every day. That’s what gets our family excited!”
 
The Fellowship awards will provide funding to enable bright individuals to gain advanced MS research training. This support early in their careers will allow upcoming clinicians and researchers to follow the paths that have the best chance of moving us closer to a world free of MS.
 
The Power family have also chosen to invest in the MS Navigator program, which helps those affected by MS to navigate the challenges of living with the disease. Not unlike the values on which they made their family’s company successful, they were attracted to the forward thinking and innovative approach of MS Navigator.
 
“There is such a complex web of issues that people with MS face,” says Jamey. “From medical, to insurance, to financial, to lifestyle, to information, and on and on. MS Navigator provides a high level of service with compassion.”
 
In Jamey’s view, philanthropy like his family and others have shown is vital to the progress being made in the MS movement. He doesn’t believe that we can expect government, academic institutions, or corporations to be leading the efforts in the fight against MS, because of how many other distractions and priorities exist.  He feels that it’s critical for people who have been impacted by MS to ensure that money is being dedicated to the effort.
 
“My family members and I have a profound and deep confidence in the Society’s leadership and the momentum they have gained,” says Jamey. “The outlook continues to get better and better because of their work.”
 
We thank the Power family and Kenrose Kitchen Table Foundation for the lasting impact they are making in the lives of people with MS and in the careers of those who want to end MS forever.  Your gift will also make a lasting impact in the lives of people living with MS, by providing life-changing support and helping young researchers to search for answers about this unpredictable and harsh disease. Your support is more critical than ever, so if you can help please give at https://ntlms.org/Give.

Share


Bike MS: Inside Out

Live Broadcast on Sept. 26 at 10 a.m.​ ET

Register or Donate Now
© 2020 The National Multiple Sclerosis Society is a tax exempt 501(c)3 nonprofit organization and our Identification Number (EIN) is 13-5661935.