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NEUROFIBROMATOSIS INC Name provided directly to GuideStar from organization* as of: 08/20/2015: NEUROFIBROMATOSIS INC

Organization Name as listed in the IRS Business Master File as of 08/10/2015: NEUROFIBROMATOSIS INC

* GuideStar encourages organizations to regularly update information on their GuideStar Nonprofit Profiles. This provides richer and broader information about their programs, impact, finances, people and more.

AKA  NF Network
Wheaton, IL

GuideStar Summary

&1002;      Updated Profile Organization has not reached a GuideStar Nonprofit Profile Participation Level ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit and Charting Impact Report are available
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Basic Organization Information

NEUROFIBROMATOSIS INC Name provided directly to GuideStar from organization* as of: 08/20/2015: NEUROFIBROMATOSIS INC

Organization Name as listed in the IRS Business Master File as of 08/10/2015: NEUROFIBROMATOSIS INC

* GuideStar encourages organizations to regularly update information on their GuideStar Nonprofit Profiles. This provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: NF Network
Physical Address: Wheaton, IL 60187 
EIN: 04-3030760
Web URL: www.nfnetwork.org 
NTEE Category: G Disease, Disorders, Medical Disciplines
G99 Diseases, Disorders, Medical Disciplines N.E.C.
H Medical Research
H99 Other Medical Research N.E.C.
G Disease, Disorders, Medical Disciplines
G50 Nerve, Muscle and Bone Diseases
Year Founded: 1988 
Ruling Year: 1990 
Top Funders: NF Hope Concert - $100,000
Great Steps for NF walk - $75,000
Combined Federal Campaign - $35,000
Top Funding Needs: NF Clinical Care Options - $25,000
Advocacy - $50,000
Social worker for patient services - $80,000


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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.

Legitimacy Information

This organization is registered with the IRS.

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

Institutional funders should note that an organization’s inclusion on GuideStar.org does not satisfy IRS Rev. Proc. 2011-33 for identifying supporting organizations.

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Annual Revenue & Expenses

(GuideStar Nonprofit Profile,
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August 2015)

Fiscal Year Starting: October 01, 2013
Fiscal Year Ending: September 30, 2014

Total Revenue $290,000
Total Expenses $295,252

Revenue & Expenses

(GuideStar Nonprofit Profile,
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August 2015)

Fiscal Year Starting: October 01, 2013
Fiscal Year Ending: September 30, 2014

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Balance Sheet (IRS Form 990)

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Leadership

(GuideStar Nonprofit Profile,
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August 2015)

Ms. Cheri Stewart

Term:

Since Oct

Leadership Statement:

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.

Board Chair (GuideStar Nonprofit Profile,
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August 2015)

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Board Co-Chair

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Board of Directors (GuideStar Nonprofit Profile,
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August 2015)

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Board Leadership Practices (GuideStar Nonprofit Profile,
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August 2015)

?

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Board Orientation & Education ?
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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 ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

Highest Paid Employee data is not available for this organization.

People information was last updated by the nonprofit in August 2015

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Programs

Program: (GuideStar Nonprofit Profile
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August 2015)

Budget:
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Category:
Population Served:

Program Description:

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.

Program Long-Term Success:

Carried out a national summer camp for NF affected children

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Advocacy for NF Research (GuideStar Nonprofit Profile
GuideStar encourages organizations to regularly update information on their GuideStar Nonprofit Profiles. This provides richer and broader information about their programs, impact, finances, people and more.
August 2015)

Budget:
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Category:
Population Served:
Adults

Program Description:

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

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Program Success Monitored by:

Program Success Examples:

Program: Educational Meetings (GuideStar Nonprofit Profile
GuideStar encourages organizations to regularly update information on their GuideStar Nonprofit Profiles. This provides richer and broader information about their programs, impact, finances, people and more.
August 2015)

Budget:
--
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
Adults
Children and Youth (infants - 19 years.)

Program Description:

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

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Program Success Monitored by:

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Program: Referrals (GuideStar Nonprofit Profile
GuideStar encourages organizations to regularly update information on their GuideStar Nonprofit Profiles. This provides richer and broader information about their programs, impact, finances, people and more.
August 2015)

Budget:
--
Category:
Population Served:
Adults

Program Description:

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

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Program: Educational materials (GuideStar Nonprofit Profile
GuideStar encourages organizations to regularly update information on their GuideStar Nonprofit Profiles. This provides richer and broader information about their programs, impact, finances, people and more.
August 2015)

Budget:
--
Category:
Population Served:
Adults

Program Description:

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

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Impact Summary from the Nonprofit Additional Information
A Charting Impact Report consists of an organization’s responses to the five questions. Helping validate this self-reported data are three reviews. Once an organization has used the online interface to complete its report, its responses will produce a document with a unique URL that will be shared on this website, on your GuideStar profile, on the reports of charities participating in BBB Wise Giving Alliance evaluations, and – in the future – with other websites and information sources about nonprofits. We encourage organizations to use this URL to share their report on their own website and through their own media channels. Participants will receive guidance about promoting their Charting Impact Report, along with other benefits, once they publish their report.

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.
For more in-depth information about this organization's impact, view their Charting Impact Report.

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