NEUROFIBROMATOSIS INC
Mission
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.
Ruling year
1990
President
Mr. Ryan Geier
Vice President
Mr. John Manth
Main address
PO Box 1530
Wheaton, IL 60187 USA
EIN
04-3030760
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.
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Communication
Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
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.
Advocacy for NF Research
NF, Inc. has a grassroots advocacy program to obtain federal dollars for Neurofibromatosis research.
Educational Meetings
NF Network provides opportunities to learn about Neurofibromatosis management and care through medical professionals with an interest in Neurofibromatosis.
Referrals
NF, Inc provides referrals to medical professionals with an interest in Neurofibromatosis.
Educational materials
NF, Inc. provides educational materials to individuals diagnosed with Neurofibromatosis and health care professionals.
Where we work
Photos
Videos
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
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.
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.
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.
What have they accomplished so far and what's next?
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.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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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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NEUROFIBROMATOSIS INC
Board of directorsas of 12/06/2022
Ryan Geier
No Institutional Affiliation
Nicole Hicks
No Institutional Affiliation
Mike Montgomery
No Institutional Affiliation
Cheri Stewart
No Institutional Affiliation
Rosemary Anderson
No Institutional Affiliation
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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 ? No -
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? No -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No
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