Disease, Disorders, Medical Disciplines

Myasthenia Gravis Foundation of America, Inc. HQ

A World Without MG

aka MGFA   |   Westborough, MA   |  http://myasthenia.org

Mission

Our Mission: Create Connections, Enhance Lives, Cure MG Our Mission Delivery Strategies: -Create a robust resource network to improve access and enhance lives for those with MG. Build a nationwide support network for those affected by MG. -Spearhead and support promising research on MG. -Improve time to diagnosis and care for MG through professional education, diagnostic tools and outreach. -Raise awareness about MG through advocacy, communications and education.

Ruling year info

1954

Chief Executive Officer

Nancy Law

Main address

290 Turnpike Road, Suite 5-315

Westborough, MA 01581 USA

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EIN

13-5672224

Cause area (NTEE code) info

Nerve, Muscle and Bone Diseases (G50)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Our Vision: A World Without MG.

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?

Support Groups

Support Groups are critical to service delivery in the Myasthenia Gravis Foundation of America, Inc. (MGFA). These groups provide support, education, and mutual aid, as well as serving as a place for myasthenia patients and their caregivers to come together and share their experiences. The MGFA has over 90 support groups across the country and is always adding more locations to better serve the mg population.

Population(s) Served
People with diseases and illnesses
Caregivers

The MG Walk is dedicated to creating awareness, renewing hope, and generating a vast network of community and support in over 35 cities in the US, all while raising important funds for the Myasthenia Gravis Foundation of America (MGFA). The MG Walk puts the power directly into the hands of MG patients, and allows everyone battling this illness to become the driving force behind funding for MG research. In addition to fundraising, the MG Walk also allows patients with MG to open up and discuss their journey in a safe and nurturing environment, many for the first time, while experiencing an overwhelming sense of community from their loved ones and fellow MG patients.

Population(s) Served
People with diseases and illnesses
Caregivers

The MG Friend Program is a patient-to-patient phone support service that provides practical advice, an understanding ear, and emotional support from a trained volunteer who is also facing the challenges of a life with MG. Because it is phone-based, the service is available to MG patients anywhere in the United States. The service is free of charge. All that the patient or volunteer needs is a phone.

Population(s) Served
People with diseases and illnesses
Aging, elderly, senior citizens

Partners in MG Care is a nationwide program that recognizes and supports quality MG care. The Partners in MG Care program seeks to... -Create a network of quality MG healthcare providers -Strengthen healthcare provider- patient connections through information, services and support -Empower MG patients with a robust resource of healthcare providers and information -Enhance knowledge-sharing, professional education and networking opportunities about MG for healthcare providers

Population(s) Served
People with diseases and illnesses

Our National Conference is an annual educational opportunity around myasthenia gravis. Over 250 participants attend, representing people with MG, family, and health professionals. The National Conference program features MG experts, community leaders and health professionals. The conference is a great opportunity to meet others in the MG Community and make friends from across the country. Some sessions are taped, so if you have not been able to attend you can still access some of this great information.

Population(s) Served
People with diseases and illnesses
Caregivers

We provide live, educational webinars quarterly, which can be accessed by all via our YouTube channel.

Population(s) Served
People with diseases and illnesses

We produce and distribute informational pamphlets and handouts for the general public. These materials provide information on myasthenia gravis, general medications / treatment programs as well as information on our services. For people newly diagnosed with MG, we provide a packet as an introduction to myasthenia gravis, letting them know about ways we can help support them in their journey with MG.

Population(s) Served
People with diseases and illnesses
Caregivers

We raise money for research grant funding and clinical trials to find better treatments, and a cure for myasthenia gravis. We work with hospitals, academic institutions, and industry partners to fund research treatments.

Population(s) Served
People with diseases and illnesses
Caregivers

Where we work

Affiliations & memberships

Better Business Bureau Wise Giving Alliance - Organization

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 participants attending course/session/workshop

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

People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

National Conference Attendees

Number of clients participating in educational programs

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

People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

MGFA Educational Webinars

Total number of grants awarded

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

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We support research that will improve the lives of patients with myasthenia gravis and related neuromuscular junction disorders.

Charting impact

SOURCE: Self-reported by organization

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

What is the organization aiming to accomplish?

Our Mission: Create Connections, Enhance Lives, Cure MG

Our Mission Delivery Strategies: -Create a robust resource network to improve access and enhance lives for those with MG. -Build a nationwide support network for those affected by MG. -Spearhead and support promising research on MG. -Improve time to diagnosis and care for MG through professional education, diagnostic tools and outreach. -Raise awareness about MG through advocacy, communications and education.

FUNDRAISING: We identify and pursue the most promising fund raising strategies to maximize revenue to support our mission. MANAGEMENT AND STEWARDSHIP We adhere to gold standard non-profit management practices, minimizing overhead while ensuring quality in staffing and efficiency in infrastructure and operations. MGFA is a member of the National Health Council and is a Better Business Bureau accredited charity.

The MGFA develops a detailed annual operational plan closely aligned with our strategic 2018-2020 Strategic Plan, and focused on six (6) key areas: 1) Driving research 2) Delivering quality programs and services 3) Raising awareness 4) Advocating for issues important to people with MG, 5) Raising funds 6) Exemplary stewardship In each area, key indicators of success are identified, and monitored. The CEO reports progress on these goals and achievement of the indicators to the MGFA Board both at midyear and year-end. Adjustments are made to investments and tactics as needed to ensure top priorities are on track.

There is exciting progress for the Myasthenia Gravis Community directly related to MGFA’s efforts and investments. With leadership in research, we have seen the fatality rate in MG reduced from 30-40% to less than 5%. Research funded by MGFA has led to the FDA approval of a new treatment for MG, and to current clinical trials in other agents. In addition, MGFA funded research in a landmark study has led to new knowledge about the role of thymectomy in treating MG. MGFA convened a group of experts who developed the first consensus based treatment guidelines for MG—setting new standards in care. The Partners in MG Care program identifies and engages clinicians to better improve access to quality MG care. MGFA hosts the premiere international meeting in the world for clinicians and scientists, and this sharing of knowledge has helped to accelerate both scientific discovery and improvements in clinical care. MGFA ensures that no one need face this disease alone, providing support

Financials

Myasthenia Gravis Foundation of America, Inc.
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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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This organization has no recorded board members.

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

Keywords

Myasthenia, research, rare disease, patient support