Breakthrough MS Quarterly Update

Breakthroughs are advances in knowledge or technique that move an individual or a movement beyond an insurmountable obstacle. Breakthroughs aren’t easy to come by. They require bold vision and ideas; they require leaders who are willing to stretch the boundaries of innovation, who galvanize experts, and who are inspired to create transformative impact.   
 
Breakthroughs are what drive not only the National MS Society, but also the International Progressive MS Alliance. People with progressive MS now have a powerful global voice and partner in advancing life-changing treatments and solutions. So, it’s no surprise that the Alliance recently attracted a transformative $4.7 million gift from a leader who is confident that the Alliance and the Society are the best investment for delivering breakthroughs to people living with progressive MS.   
 
This anonymous gift is the largest individual contribution ever received by the Society. It was made through the Society’s new $1 billion Breakthrough MS campaign and directed to one of the Alliance’s three Collaborative Network Awards. These large-scale, multi-year awards were first announced late last fall and are designed to fund international networks of researchers and institutions with potential to make crucial breakthroughs in understanding and treating progressive MS.
 
The network that attracted this groundbreaking gift works to identify promising drug candidates for progressive MS through a sophisticated screening program. Led by Dr. Francisco Quintana from Harvard’s Brigham and Women’s Hospital in Boston, this network involves eight investigators across three different countries to speed life-changing treatments to people living with progressive MS. 
  
“The level of innovation and diverse knowledge coming from these networks is unlike anything we’ve ever seen before in MS research,” says Dr. Timothy Coetzee, Society Chief Advocacy, Services and Research Officer and Alliance Scientific Steering Committee member.“With more donors who share our vision and approach, such as the generous supporter of the Quintana network, the impact we can achieve for people with progressive MS, and really all people with MS, is profound.”

While the work of all three networks is just beginning, there are clear, defined milestones that are expected to result in measurable progress. To learn more about the Alliance and the Collaborative Network led by Dr. Quintana, please be sure to watch the recording of the live webcast that aired February 13^th featuring Dr. Quintana and other Society and Alliance leaders.

My motivation to work toward a world free of MS comes each day from people affected by MS who share their life experiences with me, and from our founder, Sylvia Lawry, who established the National MS Society in 1946.
Sylvia was desperate to find a treatment for her brother, Bernard, putting an ad in the New York Times that read “Multiple Sclerosis will anyone recovered from it please communicate with patient.”

50 people answered that ad. Sylvia, just 26 years old then, mobilized these people and others to launch what would be become the largest and most influential MS organization in the world.

I knew Ms. Lawry and continue to be inspired by her spirit every day. Addressing the challenges that people with MS experience is my life’s work. I joined the National MS Society in 1985 and my first job was to connect people with MS with information, resources and each other…to reduce the terrible isolation that can occur the moment a person is told “you have MS”. We tackled challenges back then the same way we do today—bringing together people with as many perspectives as possible and shining a light on what people with MS are experiencing and what they need.  This is how solutions are found. 

As an individual supporting the Society, your passion and commitment to changing lives is inspiring. Whether it’s by ensuring people with MS have access to a nation-wide network of MS Navigators to connect them with what they need, supporting MS activists in raising their voice for change, or by fueling global collaboration on the most pressing questions facing MS research, you have the opportunity to engage in the work closest to your heart through the Society’s fundraising campaign, Breakthrough MS. Breakthrough MS is designed to offer opportunities for those in the MS movement to discover and fund what they are most passionate about. This approach is also critical to expanding our movement and equipping leaders like you with opportunities to engage others in the work that is most meaningful to them. 

People with MS need breakthroughs now. We are at a pivotal moment in time where exponential progress can be made if we all work together, to embrace and fund the work that we are most passionate about. I look forward to learning more about what drives your passion over the course of this monumental campaign. 
 
Yours truly,

The Wellness Research Work Group, a collection of researchers and people with MS with expertise and experience in MS and wellness, has published a new article on gaps and priorities in MS wellness research. The publication sets forth the key questions to promote and encourage wellness research across the MS research community and beyond, focusing on the areas of diet, exercise and emotional wellness in MS.

The goals for this group are to promote and support high-quality wellness research in order to inform Society programs, MS clinicians and other stakeholders as they develop ways to help people with MS adopt and maintain a lifestyle and outlook that promotes wellness, and to attract scientists to find solutions through MS wellness research.  People need answers to questions like: “what kind of diet gives me the best chance of living well with MS?"; What kind of exercise is beneficial?”; “How can I live my best life today?” The focus and direction of this group will ensure we can best respond to the needs of people with MS. 

In 2014, Patti Hinzman  and her husband moved to a farm ten miles from the small town of Julesburg, Colorado, near the Nebraska state line. Her husband, who has been caring for Patti for the past several years as her MS has progressed, now works 15 hour days to make ends meet. MS is “an unwanted burden” in their lives that has put a strain on almost everything. As they both approach 60, it has become clear that their retirement will look much different than they had imagined.

Patti is not alone. For too many people living with MS, significant challenges and roadblocks prevent them from living their best lives. Disease progression, lacking social programs, and environmental factors can present seemingly insurmountable obstacles.

When Patti was referred to the National MS Society, she was in a very challenging situation. She and her husband were behind on their utility bills, they had no accessible transportation options and no health insurance, which meant that Patti was not on medication or being seen by a neurologist. Patti’s scooter batteries needed to be replaced and the couple couldn’t afford new batteries, so she was mostly confined to her bed and had taken several falls trying to move around the house. Due to her husband’s long work hours and the remote location of their home, Patti – a self-described social butterfly – was extremely isolated.

The Society responds to complex and difficult situations like Patti’s through a nationwide network of supportive partners called MS Navigators. Through personal outreach and needs assessment, MS Navigators connect people living with MS to the lasting solutions they need to live their best lives.
Given the of complexity of Patti’s needs and her remote location with limited support and resources, Patti’s MS Navigator connected her to intensive case management services through the
Edward M. Dowd Personal Advocate Program.

Patti’s case manager, Dayna, was able to negotiate the donation of an accessible van from the family of another client who had recently passed away. She located community resources to pay past-due utility bills and purchase batteries for Patti’s scooter. She also got Patti set up with Medicaid and a neurologist.

With Medicaid coverage, Patti is now back on a disease modifying therapy and has home health aides who help around the house and provide companionship. She and Dayna are currently working on dental care and a service dog.

Dayna has been a lifeline for Patti. “The MS Society comes through for me every time I feel like things are hopeless. The day I met Dayna was the day my life changed. I can’t even put into words how much it means to me.” Patti also reports that her husband has done “a 180” since they started receiving the extra help. Now that he no longer has to be a caregiver, he can be a husband again.

As the Society’s Executive Vice President of Advocacy,
Bari Talente ensures that people affected by MS are able to use their voices to drive policy change at the federal, state and local levels

Q: Bari, can you tell us why Advocacy is a critical strategic activity of the Society?

A: People with MS are often confronted with numerous barriers each day that can prevent them from living their best lives. By amplifying the voices and stories of people affected by MS to drive policy change and create resources, we eliminate systemic barriers and accelerate life-changing breakthroughs– breakthroughs that ensure people have what they need to overcome the challenges of MS. Our success in advocacy is also critical to securing vital funding to fuel research breakthroughs that will uncover the treatments and solutions necessary to stop MS, restore what has been lost and end MS forever.

Q: What are the advocacy initiatives the Society is focused on to accelerate research breakthroughs?

A: Advocating for increased research funding through both the Congressional Directed Medical Research Program (CDMRP) and the NIH is an ongoing priority. The CDMRP has a specific line for MS research and through the commitment and persistence of our activists, we have secured $40 million through the source since 2009. 
 
In addition to funding, Society activists have also been pivotal in passing policy that will help to accelerate the discovery, development and delivery of life-saving treatments and improve the day-to day lives of people with MS. 
 
Q: Is this what the recent passage of the 21^st Century Cures Act was all about?
 
A: Yes, this bill represents a huge success for the MS movement for it advances many of our top priorities including establishment of a data collection system to track the incidence and prevalence of neurological conditions – providing researchers critical clues to stopping and ending MS; $4.8 billion in new funding for the National Institutes of Health and $500 million for the Food and Drug Administration to bring new treatments to patients; A six-month extension protecting access to power complex rehabilitation technology (CRT) wheelchair accessories, which are fundamental components of chairs people living with advanced MS often use. 
 
Q: Wow, what a success! Can you tell us about the other ways advocacy works to fuel life-changing breakthroughs for people living with MS?

A: Health care is a main issue of concern for people living with MS, especially access to MS medications and health insurance coverage. While we know health care and the cost of medications is a topic of much discussion by the government these days, the voices and perspectives of those who rely on life-changing medications and health insurance coverage are not included in the conversations. Currently, Society activists are leading the way in focusing the conversation on the patient experience, highlighting the components of health coverage that people with MS need and the critical fact that medications and the process for getting them need to be affordable, simple and transparent.
Other considerable challenges for people with MS that we work to alleviate include compliance with the Americans with Disabilities Act (ADA), long-term care, and transportation.

Q: What can Society supporters do to help to drive change through advocacy?

A: Join the MS activist network to learn what critical advocacy efforts are happening right now. Getting involved can be as easy as a phone call or email or sharing your story directly with elected officials at a State Action Day or legislative hearing.  There are also many opportunities to support the Society’s efforts to convene and train our nationwide network of activists. It’s incredibly inspiring for people living with MS to have their voices heard. When you fund the Society’s advocacy opportunities, you are helping people with MS realize they have the power to make change happen.