PLATINUM2023

National Fragile X Foundation

Together, We're Stronger

aka NFXF   |   Washington, DC   |  fragilex.org

Mission

To serve the entire Fragile X community to live their best lives by providing the knowledge, resources, and tools until, and even after, more effective treatments and a cure are achieved.

Notes from the nonprofit

The NFXF thanks everyone for their interest and support of our work.

Ruling year info

1983

Executive Director

Hilary Rosselot

Main address

1012 14th Street Suite 500

Washington, DC 20005 USA

Show more contact info

EIN

84-0960471

NTEE code info

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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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The diagnosis of Fragile X is frequently unexpected and families are challenged with learning everything they can to make the best of their journey. Our goal is to help families raise their special needs child(ren) to be accepted by their community and achieve success to the best of their abilities by providing them with access to quality educational resources and referrals to knowledgeable practitioners for evaluation and treatment. Life for a family living with Fragile X can also be quite isolating and we offer many ways for them to engage with other families who understand their journey and can be supportive.

Our programs

SOURCE: Self-reported by organization

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

Promoting Advocacy

We promote effective ways for families to successfully advocate for themselves and their children to meet the ongoing challenges of the Fragile X journey. Programs include:
Personalized Support Services ​
Annual Awareness Month in July
Year-Round Legislative Advocacy Program​
Community Support Network
Local volunteer-led support groups​
Virtual Community Social Events
For parents, siblings, and self-advocates

Population(s) Served
People with intellectual disabilities
People with learning disabilities
People with psychosocial disabilities
People with other disabilities

We provide valuable tools and resources to families to help manage the day-to-day challenges of life with Fragile X.​
Comprehensive and current on-demand content
Webinars, e-books, Fragile X Info Series, articles, and more​
Fragile X MasterClass™ Series
Online, knowledge-based, certification courses​
NFXF International Fragile X Conference
Multi-day in-person and online biannual event​

Population(s) Served
Families
People with intellectual disabilities
People with learning disabilities
People with psychosocial disabilities
People with other disabilities

We facilitate research activities for families and professionals, underlining their value in the research process and how their active participation advances effective treatments and a cure.
NFXF Data Repository ​
Research Readiness Program™ ​
FORWARD ​
MyFXResearch ​
International Fragile X Premutation Registry
Summer Scholars™​
Junior Investigators

Population(s) Served
Adults
People with intellectual disabilities
People with learning disabilities
People with psychosocial disabilities

Every other year international conference held in the U.S. over a 3-day period. The conferences are designed to bring together families with clinicians and research scientists. Typically attended by 1000+ from 50+ countries.

Population(s) Served
Adults

We seek to improve access and availability of informed treatment options to promote knowledge for all patients with Fragile X.
Fragile X Clinical and Research Consortium (FXCRC) ​
Treatment Recommendations ​
Fly With Me Fund

Population(s) Served
Families
People with intellectual disabilities
People with learning disabilities

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Average number of dollars received per donor

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, Families, People with disabilities

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

We received a large bequest gift at the end of 2022, which significantly impacted our average gift size in 2022.

Number of new donors

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of conferences held

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with intellectual disabilities, People with learning disabilities, People with other disabilities, People with physical disabilities

Related Program

International Fragile X Conference series

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Biannual conference. 19th NFXF International Fragile X Conference to be held in Orlando, FL in 2024

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, Families, People with intellectual disabilities, People with learning disabilities, People with psychosocial disabilities

Related Program

International Fragile X Conference series

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

The pandemic affected our in-person conference attendance. We offered a virtual/hybrid option in 2022. We hold our conference every other year, so won't have attendee numbers to add again until 2024.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

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

• 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 has successfully organized 17 international conferences that provide a unique learning and bonding opportunity for participants. We are currently planning our 18th 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 have created a consortium of FX Clinics (FXCRC) across the US and expanded the number to 32. 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 ($48M+) 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.

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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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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National Fragile X Foundation

Board of directors
as of 06/16/2023
SOURCE: Self-reported by organization
Board chair

Emily Mack

No affiliation

Term: 2020 - 2022

Emily Mack

Rajat Sarup

Emily Borg

Howard Pollock

Abby Gaunt

Stephanie Sherman

Evan Davis

Jed Seifert

Anthony Fasciano

Kara Frech

Shari Silver

Charles Mitchell

Laurie Bridges

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • 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? 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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 6/16/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

No data

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data