THE MULTIPLE SYSTEM ATROPHY COALITION INC

Enhancing quality of life and building hope for people living with multiple system atrophy

aka MSA Coalition   |   McLean, VA   |  https://www.MultipleSystemAtrophy.org

Mission

The Multiple System Atrophy (MSA) Coalition™ founded in 1989, is a 501(c)(3) charitable organization (EIN: 74-2926378) devoted to improving the quality of life and building hope for people affected by MSA through a four-pillar mission: • Providing patients and caregivers with trusted and compassionate emotional support • Educating patients, care-partners and healthcare professionals with credible, critically important and relevant information • Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure • Building a sense of community by connecting and unifying people affected by MSA

Ruling year info

2001

Board of Directors, Chair

Ms. Cynthia Roemer EdD

Main address

7918 Jones Branch Drive Suite 300

McLean, VA 22102 USA

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Formerly known as

The Shy-Drager/MSA Support Group, Inc.

EIN

74-2926378

NTEE code info

Specifically Named Diseases (G80)

Specifically Named Diseases Research (H80)

Alliance/Advocacy Organizations (G01)

IRS filing requirement

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

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Communication

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Programs and results

What we aim to solve

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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?

Annual Patient and Family Conference

Held annually in the fall in a different North American city, the patient and family conference provides educational lectures to MSA patients, care partners and family members by top healthcare providers and researchers. Additionally, the meeting is an excellent opportunity to meet and socialize with others from the MSA community. Each year researchers and medical professionals make presentations that provide real-world assistance and valuable information to people whose lives have been impacted by multiple system atrophy. For those who are unable to travel, we live-stream the conference online and make the sessions available for later viewing. Expert MSA clinicians and research scientists as well as other health professionals (occupational therapists, speech therapists, physiotherapists etc) attend and present up to date information to MSA families on how to cope with the disease. Separate breakout sessions among MSA patients and caregivers are the highlight of this meeting as each group shares their concerns, forming strong bonds and lifelong friendships. Video recordings from the past 8 conferences are available. https://www.multiplesystematrophy.org/msa-resources/annual-conference/

Population(s) Served
People with diseases and illnesses
Caregivers

The MSA Coalition provides a toll free support hotline to members of the multiple system atrophy community. The hotline features live interaction with former MSA caregivers offering emotional and educational support. Our volunteer board members spend many hours on the telephone with patients and caregivers, staying in touch over weeks and months to provide encouragement and a listening ear. We connect them with sources of information, mailing packets and emailing links. Nothing is more important to us than helping MSA families. We have walked this path too.

Population(s) Served
People with diseases and illnesses
Caregivers

Multiple System Atrophy is a rare and little-known neurodegenerative disorder and education for patients, their care partners and families, as well as healthcare professionals is greatly needed. The MSA Coalition offers print, DVD, online and downloadable educational resources to help educate members of the community. We recommend downloading our new edition of MSA: What You Need to Know. For other downloadable items see www.MultipleSystemAtrophy.org/resources
To self-order printed materials and DVDs: https://msa.authenticmerch.com/product-category/education/
View videos on our YouTube channel: https://www.youtube.com/msacoalition Or
Contact us directly for assistance:
by email: [email protected]
by phone: Support Hotline: 866-737-5999 / Business Line: 866-737-4999

Population(s) Served
People with diseases and illnesses
Academics

The Multiple System Atrophy Research Fund is used to encourage and finance critically important MSA research leading to the identification of causes, improved diagnostic methods and more effective symptomatic and disease modifying treatments: Helping to bring us closer to a cure. The Multiple System Atrophy Coalition seeks to fund the most promising MSA research anywhere in the world. To date, we have reviewed over 125 research grant proposals and awarded funding to 37 multiple system atrophy research project grants at 20 institutions in 10 countries. In total, these projects have received $1.7 million in funding. For a complete list of funded projects and the latest updates see: https://www.multiplesystematrophy.org/msa-research/projects-funded/

Population(s) Served
Academics

The MSA Coalition provides travel awards to junior scientists and medical students in order to defray the costs of attending medical and scientific congresses while presenting their MSA related research. The awards help attract talented early career investigators to the field of multiple system atrophy research and their participation at globally renowned congresses allow them to gain vital experience and contacts while promoting MSA research. Many of the early career investigators who have received MSA Coalition Travel Awards are continuing to contribute important findings to the overall knowledge of MSA. Details and a list of past awardees are available here: https://www.multiplesystematrophy.org/msa-research/early-investigator-travel-awards/

Population(s) Served
Academics

The Don Summers Memorial MSA Travel Award was established in 2014 in memory of past president Don Summers who led the organization from 1999 to 2010. Endowed by Sylvia Summers, the award consists of a $2000 cash prize and a plaque which are given in recognition of outstanding MSA research by an early career investigator. Presented annually at the American Autonomic Society Congress, this award promotes and encourages MSA research by providing early career researchers an incentive to study this rare disease and to receive recognition and financial support for doing so. The award winner is selected in partnership with the American Autonomic Society. Details and a list of past awardees are available here: https://www.multiplesystematrophy.org/msa-research/don-summers-memorial-travel-awards/

Population(s) Served
Academics

The MSA Coalition supports Continuing Medical Education training about MSA for healthcare professionals and sponsors important scientific conferences where MSA research is steadily gaining more notice. The MSA Coalition considers formal requests from organizations and researchers to co-sponsor events, programs, conferences, symposia, or congresses that are aligned with the MSA Coalition’s strategic goals and mission and which will clearly benefit those attendees who are also so aligned.

Global scientists interested in MSA now look to the MSA Coalition for leadership and rely on our financial backing to ensure important scientific conferences continue to be staged. Below is a sample of recent conferences that would not have been possible without our financial support.
International MSA Congress (2016) - Salerno, Italy
International MSA Congress (2018) - New York City, USA
International MSA Congress (2020) - Tokyo, Japan
American Autonomic Society Congress (2016) - San Diego, USA
American Autonomic Society Congress (2017) - Clearwater Beach, USA
American Autonomic Society Congress (2018) - Newport Beach, USA
American Autonomic Society Congress (2019) - Clearwater Beach, USA
Alpha-Synuclein Congress (2015) - Innsbruck, Austria
Alpha-Synuclein Congress (2017) - Athens, Greece
Alpha-Synuclein Congress (2019) - Porto, Portugal

Population(s) Served
Adults

The MSA Coalition produces a monthly e-Newsletter with distribution to over 10,000 subscribers. View the archives and subscribe here: https://us14.campaign-archive.com/home/?u=2b3cd8b3502e1cee6272918c5&id=09746f6fde

Population(s) Served
People with diseases and illnesses
Caregivers

In-person support groups: The MSA Coalition maintains contact with over 50 support groups all around the USA and Canada which welcome MSA families. A list of these support groups can be downloaded from our resources page: https://www.multiplesystematrophy.org/msa-resources/
We work closely with several individuals and organizations that facilitate MSA specific support groups. Those seeking to start a local group are encouraged to be in touch with us for advice and a supply of educational materials.
Online Support Groups: The MSA Coalition sponsors several online discussion groups for MSA families including the public MSA Coalition discussion group, the private groups MSA Buddies and MSA a Patient’s Journey as well as MSA Research News. In addition there are 9 private regional online discussion groups covering the United States. See: https://www.multiplesystematrophy.org/msa-resources/

Population(s) Served
People with diseases and illnesses
Caregivers

As a Platinum member of the National Organization for Rare Diseases and a member of the Coalition of Patient Advocacy Groups at the National Institutes of Health, the MSA Coalition stays up to date with changes in healthcare and research policy and other issues important to the rare disease community. In 2014, the MSA Coalition led the advocacy working group at the Global MSA Research Roadmap meeting and in 2018, hosted the first-ever dedicated meeting of global MSA advocates. We are dedicated to continuing to take a leadership role ensuring greater collaboration while advocating for the unmet needs of the MSA community.
Besides hosting our own annual conference for patients and families, representatives of the MSA Coalition travel around the US and Europe attending conferences in order to promote our cause and network with researchers, movement disorder neurologists and other healthcare professionals, pharmaceutical company representatives as well as other advocates for MSA or other rare neurological diseases over the course of a year.

This networking has directly led to an increase in 1. the number of physicians who find our organization and recommend us to their patients 2. the number of researchers applying for research funding 3. the number of advocacy organizations who partner with us 4. the number of pharmaceutical companies now focused on developing MSA therapies (Refer to the MSA Coalition’s treatment pipeline for a list of investigational therapies currently in development https://www.multiplesystematrophy.org/msa-research/msa-treatment-pipeline/)
Here is a partial list of conferences we regularly attend: American Autonomic Society Congress, Movement Disorder Society Congress, National Organization of Rare Disorders Rare Disease Summit, International MSA Congress, MSA New Jersey Annual Conference, Alpha-Synuclein Congress, CurePSP Family Conference, University of Maryland Atypical Parkinson Symposium, Coalition of Patient Advocacy Groups (NIH).

Promoting Multiple System Atrophy Awareness Month (March): In 2014, the MSA Coalition was instrumental in pushing for the introduction of House Resolution 518 to US Congress supporting federal recognition of Multiple System Atrophy Awareness month. https://www.govtrack.us/congress/bills/113/hres518/text
Each year we continue to partner with our sister charity, MSA New Jersey to encourage grass-roots advocates to obtain Multiple System Atrophy Awareness Month proclamations from their state and local officials. Our goal is to obtain proclamations in all 50 US states.

Population(s) Served
People with diseases and illnesses
Caregivers

Where we work

Accreditations

Approved Charity - Combined Federal Campaign 2019

Approved Charity - Combined Federal Campaign 2020

Awards

Top Rated NonProfit 2016

Great NonProfits

Top Rated NonProfit 2017

Great NonProfits

Top Rated NonProfit 2018

Great NonProfits

Top Rated NonProfit 2019

Great NonProfits

Top Rated NonProfit 2020

Great NonProfits

Top Rated NonProfit 2021

Great NonProfits

Affiliations & memberships

National Organization for Rare Disorders - Member 2016

National Organization for Rare Disorders - Member 2017

National Organization for Rare Disorders - Member 2018

National Organization for Rare Disorders - Member 2019

National Organization for Rare Disorders - Member 2020

National Organization for Rare Disorders - Member 2021

Our results

SOURCE: Self-reported by organization

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

Number of educational symposia sponsorships

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

Continuing Medical Education/Scientific Conference or Symposium Sponsorship

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

2016: IMSAC, AAS 2017: EFAS, aSyn, AAS 2018: OLG, IMSAC, Robertson, AAS 2019: A-SYN, AAS 2020: AAS, Golser, JiePie 2021: IMSAC

Number of research symposia attended

This metric is no longer tracked.
Totals By Year
Population(s) Served

Academics

Related Program

MSA Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

2016: AAN, IMSAC, MDS, AAS 2017: EFAS, AAN, MDS, aSyn, AAS, Myers 2018: IMSAC, Robertson, Golser, AAS, Myers, NORD 2019: MDS, Myers, NORD, AAS 2020; AAS, NORD, MDS, Golser, JiePie

Number of travel grants awarded to early investigators

This metric is no longer tracked.
Totals By Year
Population(s) Served

Academics

Related Program

Early Investigator Travel Awards

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

2020: No travel grants awarded due to Covid-19

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, People with diseases and illnesses, People with physical disabilities

Related Program

Annual Patient and Family Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

2020 conference was virtual due to Covid-19

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.

As Multiple System Atrophy is a rare and fatal disorder, the primary goal of the organization is to help facilitate and fund meaningful research that will lead to a disease modifying treatment or a cure. Until a cure is found, the Multiple System Atrophy Coalition provides much needed patient and caregiver support, educational resources for families, continuing medical education for healthcare providers to improve diagnosis and care, and advocate for issues important to the MSA community.

Finding a cure for a rare disease is an expensive undertaking. Fundraising today and in the future is the key to the MSA Coalition's long-term success. The MSA Coalition is reaching out to other MSA organizations and research consortiums to partner and target research dollars in a collaborative effort. With limited resources, The MSA Coalition believes this is the best approach for making progress in the vital search for a treatment or cure.

The Multiple System Atrophy Coalition board and volunteers are well connected within the MSA community and maintain outstanding relationships with the top physicians and researchers. These relationships were vital for the establishment of our Scientific Advisory Board, and our participation in the Autonomic Rare Disorder Consortium and the Global MSA Research Roadmap. We now know where the most promising research is taking place and are actively facilitating key global collaborations. There are currently 12 director positions on the board, each volunteering significant personal time to advance the mission of the MSA Coalition. There are also volunteer staff who handle the intake of donations and the outflow of acknowledgement letters and answer our dedicated toll free support line. The MSA Coalition is now a member of the Coalition of Patient Advocacy Groups and the National Organization of Rare Disorders and is making connections with other rare disease organizations to continue to learn best practices and grow our capabilities.

The Multiple System Atrophy Coalition has made substantial progress in the past 3 years on near-term goals of improving the status of the organization in the MSA Community and in establishing the infrastructure needed to meet long-term goals. In the first half of 2013 the organization changed its name from the Shy-Drager/MSA Support Group to The Multiple System Atrophy Coalition. Shy-Drager Syndrome is no longer used in the medical lexicon, so it was important to update the name for that reason. Additionally, our new name reflects the desire to work collaboratively with the entire MSA community to advance MSA causes.

Financials

THE MULTIPLE SYSTEM ATROPHY COALITION INC
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Operations

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

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THE MULTIPLE SYSTEM ATROPHY COALITION INC

Board of directors
as of 4/14/2021
SOURCE: Self-reported by organization
Board chair

Ms. Cynthia Roemer

Donald Crouse

Carol Langer, CPA

Pamela Bower

Cynthia Roemer, EdD

Lawrence Kellerman, PhD

Hadley Ferguson

Board Member Emeritus

Neil Versel

Diane Adkins, MA, MLIS

Vikram Khurana, MD, PhD

Daniel Claassen, MD

Elaine Douglas

Vera James

Board Member Emeritus

Judy Biedenharn, RN

Board Member Emeritus

David Robertson, MD

Board Member Emeritus

Thomas Chelimsky, MD

Board Member Emeritus

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 ? Not applicable
  • 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 3/2/2021,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data