Disease, Disorders, Medical Disciplines

NEUROFIBROMATOSIS INC

  • Wheaton, IL
  • www.nfnetwork.org

Mission Statement

The mission of the national NF Network is to find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, providing outreach through education and awareness, while offering hope and support to those affected by NF.

Main Programs

  1. Program 1
  2. Advocacy for NF Research
  3. Educational Meetings
  4. Referrals
  5. Educational materials

service areas

National

Self-reported by organization

ruling year

1990

chief executive

Ms. Cheri Stewart

Self-reported by organization

co-chief executive

Ms. Rosemary Anderson

Self-reported by organization

Keywords

Support, research, advocacy, public awareness

Self-reported by organization

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EIN

04-3030760

Physical Address

213 S. Wheaton Ave.

Wheaton, IL 60187

Also Known As

NF Network

Contact

Cause Area (NTEE Code)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Other Medical Research N.E.C. (H99)

Nerve, Muscle and Bone Diseases (G50)

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?

Impact statement

The NF Network is the national leader in the promotion of federally-funded NF research. We bring the voices of the NF community directly to Congress each year to secure desperately needed funds for NF research. We maintain a Clinical Referral Database of physicians with NF expertise, offer NF Clinical Care Options for the management of NF, produce educational materials and create a publication which summarizes recently published NF Research.

Programs

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

Self-reported by organization

Program 1

Creating a community of support for those affected by NF by developing local NF support groups. Providing educational meetings for individual families affected by NF. Providing educational opportunities for health care professionals. Provide physician referrals. Advocate for public and government awareness of NF. Support research to develop treatment and cure for NF.

Category

Budget

Population Served

Program 2

Advocacy for NF Research

NF, Inc. has a grassroots advocacy program to obtain federal dollars for Neurofibromatosis research.

Category

Budget

Population Served

Adults

Program 3

Educational Meetings

NF Network provides opportunities to learn about Neurofibromatosis management and care through medical professionals with an interest in Neurofibromatosis.

Category

Diseases, Disorders & Medical Disciplines

Budget

Population Served

Adults

Children and Youth (infants - 19 years.)

Program 4

Referrals

NF, Inc provides referrals to medical professionals with an interest in Neurofibromatosis.

Category

Budget

Population Served

Adults

Program 5

Educational materials

NF, Inc. provides educational materials to individuals diagnosed with Neurofibromatosis and health care professionals.

Category

Budget

Population Served

Adults

Charting Impact

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

Self-reported by organization

  1. What is the organization aiming to accomplish?
    The NF Network plays a vital role on the national NF stage, bringing the voice of the community to researchers, funders, and clinicians, pushing ever closer to the cure.
  2. What are the organization's key strategies for making this happen?
    Through awareness programs the NF Network seeks to Promote NF Research through participation in scientific, medical meetings and conferences. Increase advocacy efforts for NF research funding. Communicate the needs of the NF community and provide seed grants. While creating awareness we are facilitating NF Care through education and resources, increasing our Geographical outreach, providing clinical referrals and providing educational meetings and webinars.
  3. What are the organization's capabilities for doing this?
    The NF Network has a track record of securing through the NF Network Advocacy Program nearly $288 million for the Neurofibromatosis Research Program. These funds have been match almost dollar for dollar at the National Institutes of Health. The NF Network with it's local member organizations across the country are strategically working together to maintain the voice of the NF community through it's federal advocacy program and to provide educational and medical resources to individuals with NF.
  4. How will they know if they are making progress?
    The NF Network programs are based on creating awareness and identifying individuals and families affected by Neurofibromatosis. The NF Network and it's member organizations have identified 14,000 families in the United States with NF. We will know we are making progress as we increase the number of identified NF individuals and families affected by NF.
  5. What have and haven't they accomplished so far?
    It is been reported that 100,000 Americans are diagnosed with Neurofibromatosis. We have a need for additional awareness programs to be able to find the individuals and families in the United States.

service areas

National

Self-reported by organization

External Reviews

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Financials

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

NEUROFIBROMATOSIS NETWORK
Fiscal year: Oct 01-Sep 30
Yes, financials were audited by an independent accountant.

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Operations

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

NEUROFIBROMATOSIS INC

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2014, 2013 and 2012
  • Board Chair and Board Members
  • Access to the GuideStar Community
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CHIEF EXECUTIVE FOR FISCAL YEAR

Ms. Cheri Stewart

co-chief executive

Ms. Rosemary Anderson

STATEMENT FROM THE CEO

"We are proud to be part of the leadership of the Neurofibromatosis Network who's work is leading NF Advocacy for federal funding of NF research and building local NF community. "

Governance

BOARD CHAIR

Cheri Stewart

No Institutional Affiliation

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?