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Breakthrough MS Quarterly Update

Winter 2020

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In this article

After a Challenging Year, We Say Thank You

Over 74 years, the National MS Society has been through our share of challenges and crises. But never have we have faced a challenge like these last 9 months. Thanks to your passion, tenacity and support, we fared much better than we could have—much better than we first feared—because we sprang into action, we did not let up, and we gained strength from each other, as an MS movement. This would not be possible without you. 
 
We’ve learned a great deal since the onset of this global pandemic—being focused and practicing collective and individual resilience. We’ve tried new ways of doing things, embracing imperfection and new technology. This year, we learned what we’re made of, and you helped make that happen.

Diane Kramer
“[This pandemic has] also given us a lot of opportunities to connect in new ways. I appreciate everything going virtual, our support group has been able to meet more frequently and include more people from across the country….there are silver linings to this experience, too.”

- Diane Kramer, diagnosed in 2010

Your support allowed us to stay focused on what matters most. Ensuring, first and foremost, that people affected by MS have the information and connections they need to live well. Amplifying the voices of MS activists to improve access to affordable health care and increase federal research funding. Expanding the MS movement through virtual opportunities to meet people where they are. Ensuring that we are the welcoming, inclusive organization that brings people together, now more than ever. And, as strongly as ever, providing global leadership to advance an MS cure.
 
What you have helped us achieve to get here is remarkable. We are making our way through this crisis—together. But it is not over, and the financial toll is profound and prolonged.
 
Our vision of a world free of MS remains as clear as ever. Remarkable research progress and breakthroughs this year (see page 2) have clearly paved the pathways to a cure. But to get there, we must stay focused and harness the energy of every leader in the MS movement to continue to achieve our vision and work towards this common goal.
 
2021 will be just as hard to predict as 2020.  But with you by our side, we are ready, we are disciplined, and we will remain focused on our mission and ensure that more people living with MS than ever have access to the high-quality care and treatment they need and deserve. Our Echo MS tele-mentoring program for healthcare providers featured in this issue (see page 3) is an example of our progress!
 
Nearly 1 million people with MS and their families are counting on us. We must be a welcoming place for every person with MS to make sure that no one has to face MS alone. No matter what we face, together we are stronger.

Thank you for your unwavering support. Wishing you a joy-filled holiday season.
 
Gratefully yours,
Cyndi
 
Cyndi Zagieboylo, President & CEO, National MS Society
Cyndi Zagieboylo
Cyndi Zagieboylo, President & CEO
National MS Society

Paving the Way to MS Cures

Despite today’s challenges, MS breakthroughs have not stopped. Now more than ever, we charge forward to write the last chapter for MS.

Dr. Bruce Bebo

“Evidence is accumulating that we may be able to predict who’s at high risk for developing MS and predict it with enough confidence that one day, treatment with a disease modifying therapy or even a lifestyle or wellness strategy could be initiated prior to the onset of clinical symptoms, with the possibility that we can stop MS before it even gets started.”

- Bruce Bebo, EVP, Research

Recently, RealTalk MS podcast host Jon Strum interviewed the Society’s Executive Vice President of Research, Dr. Bruce Bebo, after the MSVirtual2020 global research conference, the largest MS research conference in the world.
 
Dr. Bebo’s biggest takeaway from the meeting was that “MS research progress hasn’t stopped because of COVID-19. There are advances in the development of new insights into MS, progress in the development of new therapies, and learnings from the application of current therapies. All of these things are helping to improve the outcomes for people living with all forms of MS.”
 
Dr. Bebo shared the progress the MS movement has made to stop MS in its tracks, restore what has been lost and end MS forever. Check out some key highlights from the 50 scientific sessions and 1,100 e-poster presentations at the conference.
 

MSVirtual2020 Highlights:

  • Stop MS:

    • Promising biomarkers to predict an individual’s disease course and progression and guide treatment decisions are advancing.
    • Results confirm that early and ongoing treatment with a disease-modifying therapy has long-term benefits for controlling disease activity, delaying disability, and protecting quality of life.
    • Three treatments with the potential to stop all forms of MS progression are moving to phase 3 trials. The treatments inhibit target cells that are involved in the immune system and there is even evidence to show that may even promote myelin repair.
  • Restore Function:
    • Advances in understanding the complex biological mechanisms of myelin repair, and how to promote repair when it stalls, including transplanting stem cells to promote repair.
    • 2018 Barancik Prize winner Dr. Robin Franklin at the University of Cambridge identified that the brain stiffens with age, which can inhibit the body’s ability to repair itself. He is studying a way to manipulate cells to fail to recognize this stiffness, in order get myelin repair back on track.
  • End MS:
    • Advances in better understanding risk factors, such as genetics, childhood obesity, exposure to Epstein-Barr virus, low vitamin D, and smoking and how they may trigger immune system malfunctions that lead to MS in order to better predict its onset.
    • In her keynote talk, Dr. Helen Tremlett at the University of British Columbia discussed the “MS Prodrome”, the phase before classic MS symptoms occur, and how there might be a future where we can diagnose and treat people in this phase before any onset or progression.
Thanks to you, we are at a pivotal moment in MS research where, as Dr. Bebo suggests, “MS may be a preventable disease.” The breakthroughs that will change lives and help end MS forever, are on the horizon—and we can seize them together. The only question is how fast we can move.

Novel Approaches to High-Quality MS Care

Everyone living with MS, regardless of where they live, must have access to high quality care, coverage, and effective treatments, to live their best lives. For those living with MS, healthcare access is threatened by the rising cost of medications, the shifting insurance landscape and limited availability of clinicians who specialize in MS. With your help, we are ­working to change this.
 
To lower the barriers to high quality care, the Society is a leader in advocacy, mobilizing MS activists to advance critical legislative initiatives so people with MS get the care and treatments they need. Your support helps us achieve our goal of finding solutions so that MS medications, and the process for getting them, is affordable, simple and transparent.
 
Another initiative is to increase both the size and specialized knowledge of the MS clinical workforce. Thanks to your support, this year over 5,700 healthcare providers participated in professional education programs hosted by the Society, thereby ensuring that people with MS have increased access to knowledgeable healthcare providers.
 
Echo MSAdditionally, in an effort to expand this workforce beyond specialty clinics in major cities, we are using the Project ECHO (Extension for Community Healthcare Outcomes) model to link expert teams of MS specialists with community healthcare providers. This tele-learning and mentoring program, deemed ECHO MS, uses interactive video conferencing to create opportunities for presentations, mentorship and discussion of patient cases that have been proven to improve knowledge and confidence- and bring expertise to people with MS.
 
Currently, 87 healthcare providers across three hubs participate in ECHO MS. These cohorts are moving along successfully, with great interest and participation. Due to the accomplishments of this project, we plan to expand ECHO MS to create additional hubs, a feat only made possible due to support from you. We are planning an additional hub for the Veteran Affairs MS Centers of Excellence to improve access to high-quality MS care for veterans living with MS, as well as a pediatric hub to increase the number of healthcare providers who can effectively deliver care to children living with MS. 
 
While the timing of this expansion will be determined by resources, staff capacity, identification of hub directors, and the ability to recruit participants, ECHO MS keeps moving forward. With your continued support of the Society, people with MS will have a better chance of getting an accurate diagnosis sooner, accessing high-quality MS care and affording their MS medications.

Celebrating an Important Milestone in a Couple's Long History of Support

Mal and Donna Wattman, Lawry Circle Members
“We hope to support cures and different ways of helping people who have this disease.”

- Mal and Donna Wattman, Lawry Circle Members

Donna Wattman first became involved with the National MS Society more than 30 years ago, shortly after she received her own diagnosis. It had become too difficult for her to work full-time, so instead, she decided that she would volunteer at the National MS Society office in New York City. For many years, she helped with whatever needed to be done in the office and at events.
 
Eventually, Donna’s MS progressed to the point where she couldn’t manage taking the bus anymore and had to stop volunteering. It was around that time that her husband Malcolm (“Mal”), a man with many years of legal and financial experience on Wall Street, joined the Board in New York City as a way to do what he could to support his wife and other people with MS.
 
Today, Donna describes her husband as “Mr. MS” and says he is “the smartest guy she’s ever known.” Through his contribution of time, Mal has played an important role in the progress of MS research, as well as making life easier for those who are living with this disease. As a board member for the last 15 years (serving as both a National Director and local trustee), he’s optimistic about where things stand today.
 
“The Society has recently renewed their focus on talking about a cure” says Mal. “Researchers are far enough along that the concept of a cure is now possible. We are getting on top of the progression of the disease, and maybe someday will be able to end it forever.” 
 
During the difficult time of COVID-19, Mal has continued to take part in board meetings virtually from his home in South Florida. He and Donna were also recently recognized for their incredible contributions at a virtual version of the New York City Dinner of Champions, something that Donna says was “such an honor.”
 
In addition to their generosity of time, Donna and Mal have recently achieved an incredible milestone in their personal giving and fundraising—they have given and raised a collective $1 million in support over the years.
 
Armed with a fierce desire to help however they can, Donna and Mal have also become members of the prestigious Lawry Circle by designating gifts through their will and the charitable annuity program. By making this commitment, they hope to set an example for all other supporters concerned about finding a cure in the future.
 
“We hope to support cures and different ways of helping people who have this disease,” Mal says. “Fortunately, we have had a good life, and we want to give back to other people,” adds Donna.

Thank you to this hard-working and philanthropic couple for playing such an important role in the work of the Society. Your heart-warming generosity of time and treasure has been an inspiration to everyone you come in contact with, and has done so much to help people affected by MS.

Join the Lawry Circle

Consider joining Donna and Mal as a Lawry Circle member by contacting the Society at giftplanning@nmss.org to designate the Society in your will and to explore other Planned Giving opportunities. 

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