PLATINUM2024

Muscular Dystrophy Association HQ

aka MDA   |   Chicago, IL   |  http://www.mda.org

Mission

Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA’s mission is to empower the people we serve to live longer, more independent lives.

Notes from the nonprofit

The mission of MDA since its inception 73 years ago has been to empower the people we serve to live longer, more independent lives. That mission has been a constant source of hope for more than a million people and their families during our seven decades. At MDA, families are at the heart of our mission, and the strength of the MDA community is resolute. To celebrate and recognize the power of our mission, we designated the year 2022 as the Year of Independence. Steadily, relentlessly, and successfully, the MDA has delivered more and more on the hopes and dreams of those we serve. But one thing has never changed – and never will – that is our commitment to the promise of research and emerging therapies to treat – and one day, cure – neuromuscular disorders that are genetic in nature.

Ruling year info

1952

President and CEO

Donald S. Wood PhD

Main address

1016 W Jackson Blvd #1073 Suite 3550

Chicago, IL 60607 USA

Show more contact info

EIN

13-1665552

NTEE code info

Specifically Named Diseases Research (H80)

Neurology, Neuroscience (G96)

Health Support Services (E60)

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 2023, 2022 and 2021.
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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

MDA is committed to transforming the lives of people affected by muscular dystrophy, ALS and related neuromuscular diseases.

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?

Care Centers

At MDA, we are committed to ensuring that the MDA Care Center network operates with a multidisciplinary approach which brings together the expertise of professionals from a wide range of disciplines in one location to provide coordinated, patient-centered care. Each Care Center offers a team of physicians, nurses, and other healthcare professionals with unique expertise in meeting the ever-changing needs our community. This is considered the gold standard model of care for individuals with complex medical needs. What is equally important is that MDA’s nationwide clinic network of NMD specialists are connected to the latest clinical trials and FDA approved treatments and also provide critical access to genetic therapies and diagnostic testing while serving more than 70,000 people living with neuromuscular diseases annually.

Population(s) Served
Adults

MDA has enabled the full spectrum of early scientific discoveries to uncover mechanisms of disease and identifying as well as testing therapeutic targets. We also fund vital infrastructure to expedite clinical trials and provide support for clinical network collaborations taking place all across the United States. Recognizing that promising research occurs worldwide, MDA funded a record number of international grants supporting research projects and early career fellowships, as we grow our reach beyond the United States. In 2022, MDA Venture Philanthropy (MVP) invested in the future by awarding $1.2 million to two promising start-up companies focused on developing novel therapies for neuromuscular disease. Myosana Therapeutics is developing non-viral gene therapy for muscle diseases, starting with Duchenne muscular dystrophy, while Pathmaker Neurosystems is developing a non-invasive neuromodulation device for amyotrophic lateral sclerosis.

Population(s) Served
Adults
Children and youth

Summer Camp is a magical place where anything is possible — from swimming to zip-lining, to sports and games, to dancing under a disco ball, all while gaining valuable life skills. MDA strives for every camp session to provide a true camp experience, which includes connecting with the outdoors, developing life skills, building lifelong friendships, and providing opportunities to try new things. When kids attend MDA Summer Camp they gain independence as they spend time away from home, learn to accept personal care from someone other than their parents, develop greater self-esteem and confidence, and spend time with other kids who understand what it’s like to live with a neuromuscular
disease.
MDA also provides a virtual option for Summer Camp – an online program that brings the magic of camp to
campers virtually. The program features daily Cabin Chat video calls, supply boxes sent to all participants, daily theme inspired camp activities with arts and crafts, STEM activities and more

Population(s) Served
Children and youth

The first data hub that aggregates clinical, genetic and patient-reported data for multiple NMDs to improve health outcomes and accelerate drug development. MOVR efficiently captures clinical data from visits already happening with a unique level of stability and scalability. These attributes are accomplished by combining the MDA Care Center infrastructure with strong existing relationships with principal investigators and staff, while expanding the number of active MOVR sites and the number of indications provided.
Benefits for the whole community
• Researchers can better understand the relationship between health outcomes and genes, and between health outcomes and medical interventions (such as drugs, surgeries, and medical devices).
• Clinicians can quickly match their patients to clinical trials, approved therapies, and personalized care.
• Individuals at all ages and stages of neuromuscular disease gain a platform to be "seen and counted" by the medical and scientific communities

Population(s) Served

MDA’s Advocacy team was relentless in ensuring key decision makers passed laws and policies that benefited people with neuromuscular diseases (NMDs). MDA successfully led a large coalition of organizations in a joint campaign to increase access to and expand newborn screening programs. Thanks to these efforts, Congress invested an additional $3 million for lifesaving newborn screening programs at the Centers for Disease Control (CDC) and Prevention and $2 million at the Health Resources and Services Administration. In addition, lawmakers funded $1 million for a study to improve and modernize the national newborn screening program. Finally, MDA co-sponsored the nomination for Duchenne muscular dystrophy (DMD) to be added to the Recommended Uniform Screening Panel (RUSP) for newborn screening. MDA advocated for $450 million per year for the next three years for the Money Follows the Person program, which will make it easier for people to access Home and Community Based Services.

Population(s) Served
Children and youth
Adults
Children and youth
Adults

Where we work

Awards

Sonia Skarlatos Public Service Award 2019

American Society of Gene and Cell Therapy

Videos

Our results

SOURCE: Self-reported by organization

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

Total # individuals served annually within the MDA Care Center Network

This metric is no longer tracked.
Totals By Year
Related Program

Care Centers

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Provide critical access to genetic therapies and diagnostic testing for people living with neuromuscular diseases annually

The number of New MDA Client Members per year

This metric is no longer tracked.
Totals By Year
Related Program

Care Centers

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Provided support and/or resources and depending, they participated in an event and/or program at MDA (ie. camp, walk, community education, etc.) Clients = those with a confirmed NMD diagnosis

The # of Community Education programs offered

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

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

These programs support every individual and family living with a neuromuscular disease through the delivery of relevant, responsive, & actionable content. Such as navigating critical life transitions

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 leadership in genetic medicine and neuromuscular disease treatment development will grow and that will bring new hope and possibilities to everyone living with muscular dystrophy, spinal muscular atrophy, ALS, and dozens of other neuromuscular diseases to live longer, more independent lives.

We fulfill our mission through Innovations in Science and Innovations in Care.

Innovations in science:
MDA is the largest source of funding for neuromuscular disease research outside the federal government and has invested more than $1 billion since its inception. Research supported by MDA is directly linked to life-changing therapies across multiple neuromuscular diseases
MDA's Neuromuscular Observational Research Data Hub (MOVR) is the first and only data hub that aggregates clinical, genetic and patient reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development.

Innovations in care:
We support the largest network of multidisciplinary clinics, providing best-in-class care at more than 150 of the nation’s top medical institutions. Our Resource Hub serves the community with one-on-one specialized support and we offer educational conferences, events, and materials for families and healthcare providers. Each year thousands of children and young adults learn vital life skills and gain independence at summer camp and through recreational programs, at no cost to families

MDA’s National Care Center Network…
• Is the largest network of neuromuscular clinics, providing best-in-class care at 150+ of the nation’s top medical institutions across the U.S.
• Provides expert care for individuals who are living with muscular dystrophy, ALS and related neuromuscular diseases
• Provides longitudinal provider entered clinical insights for the Neuromuscular Observational Research Data Hub (MOVR), which aggregates clinical, genetic, and patient reported data for multiple neuromuscular diseases to improve health outcomes and accelerate therapy development

MDA’s National Resource Center…
• Serves the neuromuscular community with one-on-one specialized support
• Provides educational resources and materials to help navigate living with neuromuscular disease.

MDA’s Policy & Advocacy Program…
Advocates Return to DC. After a three-year hiatus, advocates went back to Capitol Hill, but this time virtually during the MDA Virtual Summit & Hill Day. On September 28 and 29, families from across the country raised their voices and urged lawmakers to improve air travel, increase access to genetic counselors, and pass Food and Drug Administration (FDA) and clinical trial reforms. Together, MDA had 100 meetings with elected officials and now look to build on this momentum in 2023.

MDA Summer Camp and Recreational Programs
• Each year thousands of children and teens attend MDA Summer Camp, where they have the opportunity to exercise independence, connect with peers and learn valuable life skills.

MDA's National Care Center Network...
• Is the largest network of neuromuscular clinics, providing best-in-class care at 150+ of the nation’s top medical institutions across the U.S.

MDA Summer Camp and Recreational Programs
• In a 2022 post-camp survey capturing the impressions of 700+ camper parents, 98% of campers said MDA Summer Camp provides chances to make new friends or get closer with an old friend. 88% of respondents said MDA Summer Camp helps to develop a positive self-identity
Community Education
• These programs support every individual and family living with a neuromuscular disease through the delivery of relevant, responsive, and actionable content. These programs focus on navigating critical life transitions, increasing disease understanding, and supporting access to independence. MDA partners with medical thought leaders at MDA Care Centers, social workers, allied health professionals, community resource leaders, and other experts to develop programming that provides accurate and up-to-date information.
2022 Community Education Programs:
• MDA Engage Seminars and Symposia Live and on-demand virtual programs focus on providing in-depth information about a specific disease or topic relevant to the neuromuscular disease community.
• Community Education Materials Print-ready materials include disease fact sheets, at-home physical therapy guides, emergency room alert cards, and more. Many of these materials are also available in Spanish.
• ONEvoice Community Insights Structured opportunities for MDA to hear and learn from the neuromuscular disease community through surveys and family roundtables.
•Access Workshops On-demand learning focused on increasing health literacy, empowerment, and self-advocacy to overcome barriers to education, employment, insurance, equipment and more.

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 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, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection

Financials

Muscular Dystrophy Association
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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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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.

Muscular Dystrophy Association

Board of directors
as of 08/27/2024
SOURCE: Self-reported by organization
Board chair

Governor Brad Henry

Charley Schoor, Esq.

Ben Cumbo

Louis Kunkel,PhD

Mark Smith

Lilian Wu, PhD

Anjan Aralihalli

John Costantino

Ankur Ghia

Jennifer Gottlieb

Elizabeth McNally, MD, PhD

Hon. Robert E. Pipia

Eugene Williams

Dan Fries

John Howell

Nancy Kindelan

Matt Plummer

Chris Rosa

Organizational demographics

SOURCE: Self-reported; last updated 7/10/2024
info Candid has made improvements to the race and ethnicity options.

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
Decline to state
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 08/27/2024

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 ask team members to identify racial disparities in their programs and / or portfolios.
  • 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 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.