National Fragile X Foundation
Together, We're Stronger
Programs and results
What we aim to solve
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
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
Providing Education
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
Advancing Research
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
International Fragile X Conference series
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.
Improving Treatment
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
Where we work
External reviews
Photos
Our results
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
Learn more about Sustainable Development Goals.
Goals & Strategy
Reports and documents
Download strategic planLearn 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?
• 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
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
• 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.
What have they accomplished so far and what's next?
• 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
Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more
about GuideStar Pro.
Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
National Fragile X Foundation
Board of directorsas of 06/16/2023
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
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
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