Disease, Disorders, Medical Disciplines

Moebius Syndrome Foundation

  • Pilot Grove, MO
  • www.moebiussyndrome.org

Mission Statement

The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

Main Programs

  1. Conferences and Networking
Service Areas

Self-reported

National

The Moebius Syndrome Foundation has members throughout the United States,  Canada and in many other countries internationally.

ruling year

1994

Executive Director since 2015

Self-reported

Mrs. Kim Cunningham

Keywords

Self-reported

Moebius syndrome, Mobius syndrome, craniofacial, rare disorder

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Also Known As

Moebius Syndrome Foundation

EIN

13-3753992

 Number

4111566868

Contact

Cause Area (NTEE Code)

Single Organization Support (G11)

Birth Defects (G20)

Specifically Named Diseases (G80)

IRS Filing Requirement

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

Programs + Results

How does this organization make a difference?

Programs

Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Program 1

Conferences and Networking

The Moebius Syndrome Foundation offers a quarterly newsletter, available both online and in print forms, in addition to family and scientific conferences every two years   .

Category

Health Care

Population(s) Served

Disabled, General or Disability Unspecified

Budget

$50,000.00

Service Areas

Self-reported

National

The Moebius Syndrome Foundation has members throughout the United States,  Canada and in many other countries internationally.

Social Media

Blog

photos




External Reviews

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

MOEBIUS SYNDROME FOUNDATION
Fiscal year: Jan 01-Dec 31

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Operations

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

Moebius Syndrome Foundation

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2014 and 2013
  • Board Chair and Board Members
  • Access to the GuideStar Community
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Executive Director

Mrs. Kim Cunningham

BIO

Kim Cunningham began working with the Moebius Syndrome Foundation as its first Executive Director in June 2015.

STATEMENT FROM THE Executive Director

"Dear MSF Community,

Hello. My name is Kim Cunningham and I have been selected to serve as the first executive director for the Moebius Syndrome Foundation. I am so honored that I have been invited into the Moebius community and will do my best at representing the members and the overall mission of the organization.

By way of introduction, please allow me to share my background. I have been involved in nonprofit management for many years. Most recently, I served as the Executive Director for the Children's Well-Being Foundation, an organization that provides medical care to underprivileged children in Costa Rica. I have also served as the Director of Public Relations and Managing Director of Development for the American Medical Student Association.

This is an exciting time for the Moebius Syndrome Foundation! I will be working closely with the Board of Directors as we begin strategic planning. This will allow us to set a roadmap for the organization as we embrace new opportunities and grow to a new level. We have also started the process of redesigning the Foundation's Website and hope to unveil that by the end of the year.

I will be working from my office outside of Boston, Massachusetts. I spend my free time with my family; my husband and my two adorable daughters, ages 1 and 4.
Please contact me at kim@moebiussyndrome.org if you have questions or just want to introduce yourself. This is an exciting time for the Moebius Syndrome Foundation and I am looking forward to being a part of it all.

Sincerely,
Kim Cunningham"

Governance

BOARD CHAIR

Vicki McCarrell

Moebius Syndrome Foundation

BOARD LEADERSHIP PRACTICES

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RESPONSE NOT PROVIDED

BOARD ORIENTATION & 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?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?