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Breakthrough MS Quarterly Update

Summer 2020

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MS Doesn’t Stop Because of COVID-19 and Neither Will We

COVID-19 has changed everything about the way we live. How we shop for groceries. How we work and take care of our families. How we connect with our friends and community. But thanks to you, there’s one thing that hasn’t changed: the National MS Society’s commitment to people affected by MS. 

While COVID-19 has intensified life with MS, you've helped us bring hope and ensure critical services. You've enabled us to focus resources where the need is most urgent and pivot quickly to come up with innovative ways to deliver the vital information, support and social connection people with MS need.  

For instance, we are reaching new people and receiving  great feedback on our new "Ask an MS Expert" webinar series, where thousands of people tune in each week to get answers on their concerns about COVID-19 and other topics related to life with MS.

Susan - diagnosed in 1988
"The presenters did a fantastic job disseminating the information clearly. They both were enthusiastic about the work that is being done in regards to treatment, a cure and the Covid-19 pandemic, all of which gives me HOPE!  Thank you all!”

-Susan, diagnosed in 1988

As always, we are collaborating.  We have joined with other patient advocacy and disability organizations to identify and advocate for the things people with long-term chronic illnesses need to be as safe and financially stable as possible during this pandemic.

And to expedite new knowledge about COVID-19 and MS, we swiftly launched a North American COVID-19 data collection platform, COViMS, so that researchers can learn about short and long-term effects of the virus on MS and its treatments. We’ve also partnered with our friends at the Accelerated Cure Project for MS to promote their efforts to capture the experiences of people with MS and COVID-19 in their iConquerMS platform.

But even with our best efforts to adapt and remain mission and solution-focused, the pandemic has caused significant hardship for our organization. The cancellation of hundreds of fundraising events nationwide has put many of our vital services, research and advocacy activities at risk. We’ve had to make tough choices about nearly all aspects of our work, and our staff and their families have been personally affected by salary reductions, furloughs and layoffs.

While there is no easy way through a crisis of this magnitude, I’m reminded that no matter the challenge, we are always stronger together. And we’ve seen this happen! With the recent launch of our Society COVID-19 Response Fund, people like you, along with our corporate and foundation partners have stepped forward, in the boldest way possible, to support the movement you care so deeply about. I’m beyond grateful for your extraordinary leadership, compassion and generosity.  

Together, we can continue to keep people with MS and their families strong and resilient as we move forward. We need you.  Thank you!

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

Keeping People with MS First – Throughout this Crisis and Always

Despite program and event cancellations nationwide, your vital support ensures the Society can continue adapting and innovating to keep the health, safety and well-being of people with affected by MS first.  Here’s a look at what we’re doing to respond and the impact we’re seeing.
 

Providing Urgent Support

Answers to pressing questions

We're committed to being a reliable source of answers and relief for people affected by MS who are worried about COVID-19. The COVID-19 and MS Resource Center, available at nationalMSsociety.org/COVID19, was developed in response to a 45% increase in Society website traffic to provide the most up-to-date information available to the MS community wherever and whenever they need it.  

A partner to navigate challenges

MS Navigators are equipped with technology, knowledge and resources to continue delivering support to people affected by MS who need help, even when working from their own homes. Top concerns from the community right now include:  
  • General information about COVID-19 and MS treatment
  • Employment concerns related to job loss and risk of continuing work
  • Financial assistance to help with rent, utilities, food and other basic needs
  • Emotional support due to increased isolation and anxiety

Impact Highlight

A woman with MS had contacted the Society for assistance with a cooling vest. Further conversation with the MS Navigator showed that she has had a hard time paying her bills since a recent layoff. She found part-time work as a substitute teacher but was still unable to cover her bills. The MS Navigator provided information about government assistance programs, including food stamps, and was able to connect the woman to these programs.

She also asked for resources for work at home jobs which she is exploring. In the end, the Society provided financial assistance for a cooling vest and rent assistance to help make ends meet in the short-term.

The woman thanked the MS Navigator by saying, “Thank you for your (the Society’s) assistance and being able to provide some relief in a time of such unknowns.”

Virtual programming and events to reduce isolation and maintain wellness

With the inability to connect in person, new and expanded virtual programs and events ensure  people with MS can manage physical and emotional challenges and help keep the MS community connected to reduce isolation, maintain wellness and increase resilience.
    "Even though this year’s event was virtual, we’ve felt more connected to Walk MS and each other than ever. We’ve been talking a lot, using technology and getting to meet people from across the state."

    - Susan Oxley, Walk MS Indianapolis supporter
  • New Weekly ‘Ask an MS Expert’ live webinars are engaging thousands of participants every week and are bringing people affected by MS together to get their questions and concerns related to COVID-19 and its impact on their health and wellbeing, answered right away.
  • 250 Self-Help Group leaders are connecting during weekly calls to work together, getting what they need to ensure all 1,000 groups can meet virtually because no one should face MS alone.
  • A new Facebook Group offers self-paced learning units so that the over 1000 members, including several people newly diagnosed with MS, in over 10 countries, can find direct support from the Society and the MS community online.
  • Virtual Walk MS, Bike MS and other events are taking the place of in-person gatherings to keep vital community and morale building connections going and to fuel the mission.

A healthcare community better equipped to deliver care

People with MS need access to healthcare providers who understand the challenges that COVID-19 brings and can deliver vital care. We are supporting these “essential workers” with  online forums about COVID-19 and MS, and partnering with Project ECHO to deliver virtual MS and COVID-19 response clinics connecting MS specialists at MS Comprehensive Care Centers with general practice neurologists, physician assistants and nurse practitioners across the country.
 

"Patients with MS are facing both mental and physical challenges during the pandemic. From safely getting groceries to missing physical therapy, patients must overcome new obstacles in living with MS. The risk of social isolation and worsening of mood disorders and anxiety has dramatically increased. Anticipating the needs of the MS population during the crisis and providing solutions to these challenges will help our patients weather this pandemic in better health."

- Jennifer Graves, MD, PhD, MAS

Amplifying Voices to Address Urgent Needs

MS activists are helping policymakers understand the perspectives of people affected by MS during this crisis and are influencing future decisions as the pandemic’s impact unfolds. This includes federal stimulus legislation and 49 proposed COVID-19-related policies in states, 23 of which have been enacted.
 
One activist who lives with MS, Mary Rouvelas, helped the Society file a brief with the U.S. Supreme Court last month urging the high court to uphold provisions ensuring healthcare coverage for millions of Americans. The brief provides extensive scientific data showing that access to health insurance, currently at risk for many people living with MS, improves medical outcomes for a wide range of conditions and studies showing that the health law has made a measurable difference in prevention and care.

“My particular area of expertise is public policy and advocacy,” Rouvelas says, “and if I can do some good for people with MS in that arena, I want to do as much as I possibly can.”
 

Fueling MS Research

With the vital funding of supporters, and the Society’s persistent efforts to advance a global consensus on the most promising pathways to an MS cure, research progress continues. Researchers around the world, including those funded by the Society, are using time away from their labs to publish encouraging results:   
  • Using advanced imaging techniques that enable visualization of myelin repair processes in real time, researchers from the University of Colorado showed that precisely-timed learning of a motor task enhanced the repair of nerve fiber-insulating myelin in mice.
  • Higher blood levels of a molecule called neurofilament light chain (NfL) were associated with progression of disability in blood samples from 4,385 people with MS in a large Swedish study. These findings add to growing evidence that NfL has potential as a predictive biomarker of MS disease activity and disability progression through routine blood tests.

We Asked for Help and You Were There

With the launch of the National MS Society’s COVID-19 Response Fund, supporters like you are stepping forth with outstanding generosity to help people affected by MS during a time when they need it the most. Our corporate partners are also demonstrating their leadership through the development of Project Catapult, a funding initiative aimed at helping the Society catapult out of this crisis stronger and better equipped to change the world for people affected by MS.

Throughout our movement’s history, we’ve always known we are stronger together and it’s never been more evident than today.
 
Alexander Hardy, CEO, Genentech

“In the U.S., the pandemic is intensifying existing economic and healthcare disparities in alarming ways for some of the most vulnerable people. Patient advocacy organizations across chronic conditions such as multiple sclerosis are vital in their continued support to patient communities throughout the course of this pandemic and beyond. We are proud to support the National MS Society in helping to preserve and strengthen their essential patient services, such as with Project Catapult, where we hope our contribution will help people living with MS navigate their journey.”

– Alexander Hardy, CEO, Genentech, a member of the Roche Group
 
James and Kathleen Skinner

“The COVID-19 pandemic has made life with MS even more complex. We give to ensure MS Navigators are there for people with MS and their families throughout this crisis and beyond.” 

– James and Kathleen Skinner
 
“When COVID hit, we reached out to each of our partners as quickly as we could to see how we could help and how COVID was affecting their organizations. It was clear the needs of the MS community were great and since the Ray and Tye Noorda Foundation exists to help, it was an easy decision to provide additional funding in 2020 to the Society to help with their response efforts.”

– The Ray and Tye Noorda Foundation
 
Ken and Linda Sumner

“We contributed to the COVID Response Fund after several local events were cancelled due to the coronavirus. It became clear, since these events were so critical to the Society’s fundraising, that there would be a negative financial impact from this. Knowing how important the Society is to us, my wife and I decided to make an additional gift to help. The work of the National MS Society has been so important in helping my wife live her best life and we would encourage anyone who can to please dig deep and make a contribution at this time to help keep the important work of the Society going.”

– Ken Sumner, pictured with his wife Linda
 
Mary Rouvelas

“I support the National MS Society because I’m a huge fan. It really fills the need for information, outreach, and family programs which improve the quality of life for people with MS.”

– Mary Rouvelas, diagnosed in 2000
MS doesn’t stop and neither will we

Donate to the COVID-19 Response Fund Today

Your continued support is crucial as the needs of the MS community expand and evolve as the COVID-19 pandemic continues to unfold. Please give today.

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