PLATINUM2023

DEFEAT MSA ALLIANCE

#KickMSA #DefeatMSA #WeRememberMSA #DeFeetMSA

aka DEFEAT MSA   |   St Clair Shores, MI   |  http://www.DefeatMSA.org

Mission

Defeat MSA Alliance is an inclusive US based 501(c)(3) charity that aspires to balance efforts to support patients, educate medical professionals, raise public awareness, nurture promising research and advocate for the MSA community. Staffed entirely by volunteers, Defeat MSA Alliance aims to achieve a five-fold mission: To build a world that truly supports people with MSA To foster better medical education about MSA To increase public awareness about living with MSA To cultivate promising research into treatments and slowing MSA To advance the interests of all people challenged by MSA. The Alliance invites all other like-minded individuals to join us in this noble fight: to speak for those who cannot, with one mind, one heart and one voice: to defeat MSA forever!

Notes from the nonprofit

Our founding former co-director and current medical research advisor is a US board certified neurologist. He is an active member of the American Academy of Neurology (AAN), American Heart Association (AHA) and Association of Indian Neurologists in America (AINA). Our founding current director is an active member of the International Movement Disorders Society (MDS). Both founders have a personal family connection to Multiple System Atrophy, with one of them having a confirmed biological connection to MSA. More than 95% of the managing board has a direct family connection to the disease.

Ruling year info

2013

Director

Prof Philip M Fortier

Main address

29924 Jefferson Ave

St Clair Shores, MI 48082 USA

Show more contact info

EIN

46-0661655

NTEE code info

Fund Raising and/or Fund Distribution (H12)

Alliance/Advocacy Organizations (T01)

Specifically Named Diseases (G80)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

People suffering from Multiple System Atrophy (MSA) face a difficult landscape in a variety of ways, beginning with the search for a definitive diagnosis, ignorance among health providers, very little public awareness, few patient support programs and next to nil in terms of MSA research funding. We plan to change that dim prognosis. We offer both a passionate heart and a collaborative hand to any and all people that wish to walk with us on our journey. Together, we can and will defeat this devastating disease forever!

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?

MSA Patient Durable Medical Equipment Loaner Closet

MSA’s debilitating nature often prevents patients from doing basic, day-to-day activities. The Defeat MSA Alliance Loaner Closet Program was designed to give MSA patients the medical equipment they need to help them in these cases. Currently, Defeat MSA Alliance is the sole charity in the program. Below is a list of the equipment that we have been able to acquire for MSA patients in the past:

Motorized Reclining Wheelchairs
Hospital Chairs
Assistive Communication Devices
Cough Assist Machines
CPAP Machines

Get more information by following our Defeat MSA Alliance Loaner Closet Program on Facebook or by emailing us at [email protected]!

Population(s) Served
People with physical disabilities
Adults

Defeat MSA Alliance sponsors two of the only three patient support groups in all of North America. Meetings are held throughout the year, at Saint Joseph Mercy Medical Center in Pontiac, Michigan. Oftentimes, healthcare professionals with experience with MSA are invited to present to the group. A practicing neurologist with experience treating patients with MSA also attends the meetings.

Population(s) Served
Adults
People with physical disabilities

Throughout the year, Defeat MSA Alliance sponsors awareness events, including national billboards, media projects, film festivals and social activities geared toward raising awareness and funds. Defeat MSA Alliance also hosts the Defeat MSA Awareness Shoe, a normal sized globetrotting athletic shoe used as a tool to raise awareness around the world #KickMSA! For more information on the MSA Awareness Shoe, visit: www.MSAshoe.org

Population(s) Served
Adults

People with brain disorders face challenges attending onsite support groups and also learn about relevant research studies. This MSA registry is designed as resource to support both patients and their caregivers and to connect with current researchers seeking participants.

Population(s) Served
Adults
Caregivers

Where we work

Awards

Member (2017-2021) 2021

Movement Disorders Soc,

Affiliations & memberships

National Organization for Rare Disorders - Member (2018-2021) 2021

Our results

SOURCE: Self-reported by organization

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

Average number of service recipients per month

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

Adults

Related Program

MSA Patient Support Group

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Patient and Caregiver Support Sponsored Groups - Growth Combined - all pages and groups

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.

Realizing that much of the current attention is focused on more widely known diseases, Multiple System Atrophy is often overlooked. MSA patients are confronted with a dim prognosis and left with few options. Defeat MSA Alliance is an inclusive US based 501(c)(3) charity that aspires to balance efforts to support patients, educate medical professionals, raise public awareness, nurture promising research and advocate for the MSA community. Staffed entirely by volunteers, Defeat MSA Alliance specifically aims to achieve a five-fold mission:

To build a world that truly supports people with MSA
To foster better medical education about MSA
To increase public awareness about living with MSA
To cultivate promising research into treatments and slowing MSA
To advance the interests of all people challenged by MSA.

Defeat MSA Alliance invites all other like-minded individuals, around the world, to join us in this noble fight: to speak for those who cannot, with one mind, one heart and one voice: to defeat MSA forever!

We aspire to balance our pursuit of improved patient support, greater public awareness, better medical education, increased research and stronger advocacy for the MSA community.

In order to do succeed in our efforts, we continually review our existing programs and select new programs in accordance with our overall mission as an organization. Using an analysis of strengths, weaknesses, opportunities and threats (SWOT), we regularly check outcomes and align them to our mission.

Defeat MSA Alliance is well-suited to fulfill its mission to serve MSA patients worldwide. The charity's board of directors and board of advisors is composed of one patient with MSA, six former MSA caregivers, one practicing neurologist who has experience treating people with MSA, one occupational therapist, one speech language pathologist, one social worker and one expert in environmental toxins and safety.

Defeat MSA Alliance is also assisted by 30 additional advisors, coming from all walks of life, all devoted to the defeat of MSA forever!

All of Defeat MSA Alliance's Board Members are volunteers and each one of them is passionately driven in their MSA activism due to a close family or personal connection with the disease. We are now in the process of bringing aboard an additional patient advocate, both as board members and advisors, with medical background.

Defeat MSA Alliance also has strong support and connections with hundreds of volunteers and donors around the world. We are in a constant effort of leveraging these connections to better serve our patients, our MSA community and the wider rare and brain disorder communities.

As of 2021, Defeat MSA Alliance and its partners in the MSA United Consortium (www,msaunited.org) have sponsored 8 regular support groups for families affected by MSA. We have successfully funded six films, of varying length, that are geared to raising public awareness about MSA. We have represented our cause and our MSA charity at 15 national and international medical conferences. We have initiated 16 legacy grants to raise vital research funds. This year, we will hold our second virtual conference, bringing together more than 800 patients, caregivers, advocates, health care providers, industry professionals and researchers.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
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 tell the people who gave us feedback how we acted on their feedback, 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, Staff find it hard to prioritize feedback collection and review due to lack of time

Financials

DEFEAT MSA ALLIANCE
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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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lock

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.

DEFEAT MSA ALLIANCE

Board of directors
as of 10/25/2023
SOURCE: Self-reported by organization
Board chair

Prof Philip Fortier

University of Detroit Mercy, Philosophy Faculty, Detroit, MI

Term: 2018 - 2023

Patricia Boylan

Toledo, Ohio

Ann Bagchi

Rutgers, NJ

Elena Fracassa

Detroit, MI

Margaret MacLachlan

Grand Rapids, MI

Mary Jane Scharfenkamp

Clarkston, MI

Corey Sutton

Holly, MI

Philip Fortier

St. Clair Shores, MI

Donna Yost

Oviedo, FL

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 10/25/2023

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
Male, Not transgender
Sexual orientation
Gay, Lesbian, Bisexual, or other sexual orientations in the LGBTQIA+ community
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 01/22/2020

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 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 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.