PLATINUM2023

National Multiple Sclerosis Society HQ

Mission

We will cure MS while empowering people affected by MS to live their best lives.

Ruling year info

1947

Principal Officer

Cyndi Zagieboylo

Main address

733 Third Avenue 3rd Floor

New York, NY 10017 USA

Show more contact info

EIN

13-5661935

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Our mission: We will cure MS while empowering people affected by MS to live their best lives.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Client Programs

Programs facilitate education, recreation, physical and emotional wellness, and connection with others.

Population(s) Served
People with diseases and illnesses

Our vision is a world free of MS. We are a driving force of MS research and treatment to stop disease progression, restore function, and end MS forever.

Population(s) Served
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Percentage of people who connected to Society resources and support who felt more confident in addressing the challenges of MS.

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

Based on survey responses from a variety of National MS Society programs

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our strategic plan guides the impact we will achieve through 2024. It addresses the unique experiences of all people affected by MS and our role in reaching that future, while highlighting our firmly held belief—together we are stronger. Our strategic plan is focused on four impact areas: (1) improving access to personalized, high-quality MS healthcare (2) empower people affected by MS to solve everyday challenges, (3) accelerate cures through global leadership, and (4) strengthen the MS movement through more and deeper connections.

Invest in global research that accelerates progress of the Pathways to Cures Roadmap
Provide leadership to coordinate and leverage global research investments
Expand and diversify the MS research workforce
Advocate for policy and regulatory changes that advance MS research and treatment
Engage people affected by MS in the development of research strategy and implementation
Increase awareness and recognition of MS and its symptoms among people at risk of MS and healthcare providers
Advance systemic policies (legislation, regulation, company policies) and changes that improve the lives of people with MS (cost, access)
Advance evidence-based MS care guidance (personalized healthcare)
Build capacity and understanding of MS within the healthcare system
Position the Society as the global leader in delivering trusted information and resources for people affected by MS
Partner with people affected by MS to develop a personalized roadmap to navigate their MS
Leverage the expertise of strategic partners to get people affected by MS what they need
Bring more people and diversity into the MS movement
Engage people how they want to be engaged
Create experiences to ensure continued engagement
Enable technologies to improve constituent experience
Strengthen our staff and volunteer workforce through talent acquisition, engagement, and professional development
Increase organizational innovation

We mobilize volunteers, staff, organizations, and communities to develop resources and deepen connections and action, including donor engagement at all levels. We facilitate worldwide research, scientific collaboration and training while creating connections to the resources, information and others so that people can live their best lives as we work to end MS forever. We engage people in local, state and national advocacy to ensure that decision-makers are fully informed, and we equip staff and volunteers with the tools, technology and training to work most effectively. We ensure an inclusive and powerful culture that compels people to be leaders in the MS movement as we engage the world in achieving a world free of MS.

• The National MS Society is the world’s leading private funder of MS research, investing $1.1 billion since 1946.
• The National MS Society is relentless in ensuring all decision-makers are clear about the financial devastation that the high cost of medications can cause – a complex problem that requires all stakeholders coming together to solve.
• The National MS Society advanced the careers of over 1,000 researchers who have been behind nearly every major breakthrough and treatment in MS.
• The National MS Society has launched the careers of 120 MS specialists who provide care to more than 100,000 people with MS.
• The National MS Society tackles the complex challenges of MS from many angles, like MS Navigator for individual solutions, advocacy to create systemic change and lifestyle research to inform what people can do every day to live their best lives.
• People affected by MS are more resilient and live better lives when they are connected with the National MS Society.
• In the United States, 100% of people affected by MS have access to an MS Navigator who will partner with them to address individual challenges and concerns. MS Navigators spend 3.5 hours on average working with each person, and care management is available when problems are so complex they require home visits.
• Over 500,000 of the nearly 1 million people living with MS in the United States are connect to the National MS Society.
• People who participate in National MS Society programs live better lives – they are less isolated, better informed and happier.
• The National MS Society has invested in early research that has led to the discovery of every effective treatment for MS, including the first therapies for primary progressive and pediatric MS.
• As lead agency of the International Progressive MS Alliance, we lead a coordinated, global effort to fuel breakthroughs for people with progressive MS. 20 MS organizations from 19 countries have joined the Alliance.
• The National MS Society has provided early career support and funding to nearly every recognized MS expert.
• Nationwide, more than 35,000 MS activists amplify the voices of the MS community, shaping government decisions affecting people with MS, and making new solutions possible, affordable, and accessible.
• MS activism has led to $93.1 million in MS research funding through the Department of Defense.
• MS activists have played a direct role in increasing access to generic MS medications and ending surprise medical billing.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

National Multiple Sclerosis Society
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Compare nonprofit financials to similar organizations

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

National Multiple Sclerosis Society

Board of directors
as of 08/29/2023
SOURCE: Self-reported by organization
Board chair

Richard Knutson

Eugene May

Secretary

Peter Porrino

Retired

Mindy J Alpert

Smith Barney

Greg Bishop

Williams Mullen

Michal Bogdonoff

Chris Campbell

eFinancial

Hafiz Chandiwala

Coca-Cola Bottling Company

Kassaundra Escalera

Amazon

Dana Foote

KPMG LLP

Elizabeth Forstneger

Cushman & Wakefield

Brendon Gallagher

Sirius Wealth Management

Shyam Gidumal

WeWork

Peter Harbilas

CornerStone Partners LLC

Andy Harris

Janssen

Ian Harris

Investing Company

Lily Jung Henson

Piedmont Henry Hospital

Bonnie Higgins

Retired

William Holley

Parker, Hudson, Rainer & Dobbs, LLP

Mark Livingston

Rick McDermott

McDermott IP Law

William T Monahan

Imation Corporation

Elizabeth Page

Russell Parker

rpmAUM

Chet Porembski

Nannette L Reid

US Bank

Elizabeth Rodriguez

JLL's Project & Development Services

Tobi Rogowsky

David M Rottkamp

Grassi & Co.

Robert K Shin, MD

Georgetown Multiple Sclerosis and Nueroimmunology Center

Diana Twadell

Integrity Employee Benefits and Insurance Services

Laura Vaccaro

Valero Energy

Wendi Wasik

Wasik Consulting

Malcolm P Wattman

Retired

Caroline Whitacre, PhD

Retired

Mitzi Williams

Joi Life Wellness Group

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 7/7/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

Equity strategies

Last updated: 07/07/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.