Disease, Disorders, Medical Disciplines

National Fragile X Foundation

aka NFXF

McLean, VA

Mission

The National Fragile X Foundation unites the Fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for Fragile X.

Ruling Year

1983

Chief Executive Officer

Tony Ferlenda

Chief Operating Officer

Linda Sorensen

Main Address

1861 INTERNATIONAL DRIVE, SUITE 200

McLean, VA 22102 USA

Keywords

Fragile X-associated Disorders including fragile X syndrome, FXTAS, FXPOI, disability, autism

EIN

84-0960471

 Number

2348651607

Cause Area (NTEE Code)

Brain Disorders (G48)

Developmentally Disabled Services/Centers (P82)

Autism (G84)

IRS Filing Requirement

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

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Programs + Results

What we aim to solve New!

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Our programs

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

SOURCE: Self-reported by organization

Fragile X Clinical & Research Consortium

Support Services

Research

International Fragile X Conference series

Community Support Network

Where we workNew!

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Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

• Find effective treatments and helping people live with Fragile X every day.
• Increase our outreach. Currently over one million Americans are living with Fragile X syndrome - the NFXF only interacts with five percent of that population.
• Obtain universal awareness for Fragile X and Fragile X-associated Disorders.
• Increase the accessibility of clinics and treatment sites for every person living with Fragile X in America.
• Achieve recognition that Fragile X holds the key to unlocking autism and all other developmental disabilities and obtain funding commensurate to all other developmental conditions.
• Create appropriate educational and development opportunities for adults living with FX that are consistent with each individual's unique needs.
• Facilitate equal and appropriate housing and employment opportunities for individuals to ensure their ability to be productive, contributing members of our society

The NFXF has five core strategies:
• Bring national attention to the Fragile X and Fragile X-associated Disorders through education of and outreach to the general public, medical profession and national leaders.
• Enhance our reputation as the center of authority for support, information, resources and awareness of Fragile X.
• Increase the accessibility to specialized Fragile X clinics staffed by knowledgeable medical professionals capable of determining effective evaluation and treatment strategies.
• Train and mentor volunteer support group (CSN) leadership to implement the NFXF mission at the local and regional level.
• Expand our revenue base from multiple sources – increased number of donors, amount of gifts, grants and revenue generating platforms to support the ongoing mission of NFXF.

• The NFXF continues to expand. Today, our professional staff consists of eight highly skilled individuals with a wealth of experience in public policy, advocacy, communications, development, organizational management, technical assistance, and more.
• The NFXF’s Community Support Network includes more than 50 chapters across the U.S. We harness the breadth of the network to reach the FX Community and the public with our messaging.
• The NFXF has successfully organized 14 international conferences that provide a unique learning and bonding opportunity for participants. We are currently planning our 15th conference with plans for significant improvements in the quality and delivery of educational content as well as growth in attendance.
• The NFXF works closely with leading academicians in the FX Clinical and Research Consortium to develop, conduct and publish research pertaining longitudinal data in the FX population. The work is expected to continue over the next five years and advance the opportunities for viable treatments and ultimately a
cure for FX.
• The NFXF has an outstanding Board of Directors made up entirely of parents, family members, and FX experts with the vision, expertise and commitment to lead the organization forward.

We measure success in a variety of ways. When you do something well, others want to join.

• The NFXF had 15 active volunteer Community Support Network (CSN) groups in 2010. Today there are more than 50 groups that actively participate in the network, and we continue to grow. We are able to examine progress through NFXF’s annual survey of CSN Groups.
• We also can determine the growth of the foundation’s social media reach, which is helping elevate awareness of Fragile X and promoting support to help alleviate the need.
• We will also continue to attract the best of the best FX professionals as presenters at our international conferences as well as increasing the number of individual and family participants.
• We will increase the amount of federal funding available for FX research through our public policy and legislative advocacy efforts.
• We will help create appropriate educational and development opportunities for adults living with FX that are consistent with each individual's unique needs.
• We will facilitate equal and appropriate housing and employment opportunities for individuals to ensure their ability to be productive, contributing members of our society.
• We also will measure success by our ability to continue and grow our Funds for our clinical micro-granting program, which will distribute $120,000 in funding to 20 Fragile X clinics.

• We have created a consortium of FX Clinics (FXCRC) across the US and expanded the number to 25. This allows families access to evaluation and treatment services without having to travel long distance frequently a major difficulty.
• We have created greater public awareness and understanding of Fragile X and helped make the case to the federal legislature that Fragile X holds the key to unlocking autism and other developmental disabilities.
• We have helped procure and maintain a dedicated stream of federal funding ($30m+) for Fragile X research.
• We have attracted funding to grow the NFXF capacity and also to provide more support to volunteer leadership.
• We have not been able connect with the underserved minority population who may not realize that Fragile X is at the very least, the diagnosis that can lead them to more help. But new individuals contact us every day.
• We have not been able to find a cure for Fragile X, yet that remains a lofty goal that we strive to achieve.

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Financials

National Fragile X Foundation

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Operations

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

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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

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?

Yes

CEO OVERSIGHT

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

Yes

ETHICS & 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?

No