Massachusetts ME/CFS & FM Association

Education, support and advocacy since 1985

aka Mass ME/CFS   |   Quincy, MA   |  www.massmecfs.org

Mission

The Massachusetts ME/CFS & FM Association, a 501(c)(3) founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome (CFS), or FM (Fibromyalgia), their families and loved ones. We work to educate health-care providers and the general public, to support patients and their families, and to advocate for more effective treatment and research.

Ruling year info

1993

President

Phil Chernin

Main address

PO Box 690305

Quincy, MA 02269 USA

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EIN

04-3014644

NTEE code info

Alliance/Advocacy Organizations (G01)

IRS filing requirement

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

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Communication

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?

Patient Services, Advocacy, Education

The Massachusetts ME/CFS & FM Association, a 501(c)(3) founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome (CFS), or FM (Fibromyalgia), their families and loved ones. We work to educate health-care providers and the general public, to support patients and their families, and to advocate for more effective treatment and research. Learn more or contact us at www.massmecfs.org.

Population(s) Served
People with diseases and illnesses

Where we work

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.
  • Who are the people you serve with your mission?

    People with ME/CFS and/or FM and their families.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    Because we serve a population with often severe disabilities, we started a program of virtual meetings in order to reach more people. We initiated biweekly peer support discussion groups and monthly seminars on medical research topics.

  • With whom is the organization sharing feedback?

    Our board,

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

    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 people’s interactions with us (e.g., site, frequency of service, etc.), We act on the feedback we receive,

  • 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 hard to come up with good questions to ask people,

Financials

Massachusetts ME/CFS & FM 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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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Massachusetts ME/CFS & FM Association

Board of directors
as of 7/21/2021
SOURCE: Self-reported by organization
Board chair

Phil Chernin

Leah Williams

Patricia Woods

Susan Buckley

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? No
  • 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? No

Organizational demographics

SOURCE: Self-reported; last updated 07/21/2021

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

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 07/21/2021

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

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.