Mission: FRAXA Research Foundation was founded in 1994 by three parents of children with Fragile X syndrome to support scientific research aimed at finding a treatment and a  ... (More)

FRAXA Research Foundation is a 501(c)(3) organization, with an IRS ruling year of 1994, and donations are tax-deductible.

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Contact Information

  http://www.fraxa.org/

 10 Prince Place, Suite 203
Newburyport MA 01950 

  978-462-1866


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Star Rating System


Charity Navigator evaluates a nonprofit organization’s financial health including measures of stability, efficiency and sustainability. We also track accountability and transparency policies to ensure the good governance and integrity of the organization.




Exceptional

This charity's score is 92.38, earning it a 4-Star rating. Donors can "Give with Confidence" to this charity. 

This score is calculated from two sub-scores:

This score represents Form 990 data from 2019, the latest year published by the IRS.

View this organization’s historical ratings.


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Star Rated Report

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Program Expense

Program Expense Ratio

87.2%


The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s).


This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Administrative Expenses

4.5%


As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Fundraising Expenses

8.1%


This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Liabilities to Assets Ratio

0.3%


The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).


Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.


Source: IRS Form 990

Fundraising Efficiency

$0.07


The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.


Source: IRS Form 990

Working Capital Ratio

1.71 years


Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.


Source: IRS Form 990

Program Expense Growth

-3.53%


We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.


Source: IRS Form 990

Governance


Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.


Sources Include: IRS Form 990

Governance:
Independent Voting Board Members  ... (More)
No Material Diversion of Assets ... (More)

A diversion of assets – any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft – can seriously call into question a charity's financial integrity. We check the charity's last two Forms 990 to see if the charity has reported any diversion of assets. If the charity does report a diversion, then we check to see if it complied with the Form 990 instructions by describing what happened and its corrective action. This metric will be assigned to one of the following categories:

  • Full Credit: There has been no diversion of assets within the last two years.

  • Partial Credit: There has been a diversion of assets within the last two years and the charity has used Schedule O on the Form 990 to explain: the nature of the diversion, the amount of money or property involved and the corrective action taken to address the matter. In this situation, we deduct 7 points from the charity's Accountability and Transparency score.
  • No Credit: There has been a diversion of assets within the last two years and the charity's explanation on Schedule O is either non-existent or not sufficient. In this case, we deduct 15 points from the charity's Accountability and Transparency score.
(Less)
Audited Financials Prepared by Independent Accountant ... (More)

Audited financial statements provide important information about financial accountability and accuracy. They should be prepared by an independent accountant with oversight from an audit committee. (It is not necessary that the audit committee be a separate committee. Often at smaller charities, it falls within the responsibilities of the finance committee or the executive committee.) The committee provides an important oversight layer between the management of the organization, which is responsible for the financial information reported, and the independent accountant, who reviews the financials and issues an opinion based on its findings. We check the charity's Form 990 reporting to see if it meets this criteria.

  • Full Credit: The charity's audited financials were prepared by an independent accountant with an audit oversight committee.

  • Partial Credit: The charity's audited financials were prepared by an independent accountant, but it did not have an audit oversight committee. In this case, we deduct 7 points from the charity's Accountability and Transparency score.
  • No Credit: The charity did not have its audited financials prepared by an independent accountant. In this case, we deduct 15 points from the charity's Accountability and Transparency score.
(Less)
Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties ... (More)
Documents Board Meeting Minutes ... (More)
Distributes 990 to Board Before Filing ... (More)
Compensates Board ... (More)

Policies


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.


Sources Include: IRS Form 990 and organization's website

Policies:
Conflict of Interest  ... (More)
Whistleblower ... (More)
Records Retention and Destruction ... (More)
CEO Compensation Process ... (More)
Donor Privacy ... (More)

Donors have expressed extreme concern about the use of their personal information by charities and the desire to have this information kept confidential. The exchanging and sale of lists for telemarketing and the mass distribution of "junk mail," among other things, can be minimized if the charity assures the privacy of its donors. Privacy policies are assigned to one of the following categories:

  • Yes: This charity has a written donor privacy policy published on its website, which states unambiguously that (1) it will not share or sell a donor's personal information with anyone else, nor send donor mailings on behalf of other organizations or (2) it will only share or sell personal information once the donor has given the charity specific permission to do so.

  • Opt-out: The charity has a written privacy policy published on its website which enables donors to tell the charity to remove their names and contact information from lists the charity shares or sells. How a donor can have themselves removed from a list differs from one charity to the next, but any and all opt-out policies require donors to take specific action to protect their privacy.
  • No: This charity either does not have a written donor privacy policy in place to protect their contributors' personal information, or the existing policy does not meet our criteria.

The privacy policy must be specific to donor information. A general website policy which references "visitor" or "user" personal information will not suffice. A policy that refers to donor information collected on the website is also not sufficient as the policy must be comprehensive and applicable to both online and offline donors. The existence of a privacy policy of any type does not prohibit the charity itself from contacting the donor for informational, educational, or solicitation purposes.

(Less)

Transparency


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.


Sources Include: IRS Form 990 and organization's website

Transparency:
CEO Salary Listed on 990 ... (More)
Board of Directors Listed on Website ... (More)
Key Staff Listed on Website ... (More)
Audited Financial Statements on Website ... (More)
Form 990 Available on Website ... (More)

Additional Information

Unscored

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Total Revenue and Expenses

Total Revenue and Expenses

This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.

Salary of Key Persons

Presented here are up to five of this organization's highest compensated employees. This compensation data includes salary, cash bonuses, and expense accounts and is displayed exactly how it is reported to the IRS. The amounts include salary, cash bonuses, and expense accounts. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. Read the IRS policies for compensation reporting



MICHAEL TRANFAGLIA, MEDICAL DIRECTOR/TREASURER/SECRETARY

$107,671


DAVID BJORK, DEVELOPMENT DIRECTOR

$100,000


KATHERINE CLAPP, PRESIDENT

$94,751


DEBORAH STEVENSON, BOARD CHAIR

$0


DEAN CLARK, DIRECTOR

$0


Source: IRS Form 990 (page 7), filing year 2019

Business Master File Data

Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website


Activities:

Described in section 170(b)1)(a)(vi) of the Code (BMF activity code: 994)

Scientific research (diseases) (BMF activity code: 161)


Foundation Status:

Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi) (BMF foundation code: 15)


Affiliation:

Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)

Data Sources: IRS Forms 990

The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).

Pandemic Response

Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them. Charities may submit their own pandemic responses through their nonprofit portal.


FRAXA Research Foundation reported being impacted by COVID-19 in the following ways:
  • Fundraising Capacity

  • Revenue


How COVID-19 impacted the organization's operations financially:

FRAXA relies on the generous contributions of others to provide research grants and fellowships. Due to COVID-19, our special events were all canceled, resulting in a significant revenue loss. Additionally, because COVID-19 affected many companies with whom we work, as well as private donors, our sponsorships and major gifts experienced a down turn.


How COVID-19 impacted the organization's delivery of programs:

FRAXA funds research grants and fellowships across the globe, and many of our partners are doctoral and post-doctoral students at universities. With COVID-19 forcing many universities to move to a virtual setting, research was put on hold. This resulted in FRAXA not providing as many grants as previous years because the opportunities simply weren't available. Additionally, grants and fellowships that had been extended were put on hold until operations could resume.


How this organization adapted to changing conditions caused by COVID-19:

COVID-19 gave FRAXA the opportunity to reconsider how we provide family services and conduct elements of research. Like many companies, we increased our online presence and delivered family services virtually. We were able to keep elements of research moving forward by hosting brainstorming meetings with our partners over Zoom, conducting virtual planning meetings for studies and delivering some research aspects - surveys, initial appointments - virtually. greater online presence - delivered family services virtually - research online (virtual visits, surveys, meetings, brainstorming, planning)


Innovations the organization intends to continue permanently after the pandemic:

In many ways, the forced adaptations due to the pandemic helped our Fragile X community grow closer, despite distance. Moving forward, FRAXA will continue to organize virtual events, such as World Fragile X Day, in the hopes of connecting Fragile X families across the globe. FRAXA also began virtual education programs for families and those affected by Fragile X. For example, we organized a session for families in India, giving them direct access to professionals who could answer their questions about Fragile X and treatments. These types of webinars will continue so that we can encourage participation in research and make FRAXA's work more relatable to those affected.


Historical Ratings

Date PublishedForm 990 FYEOverall ScoreOverall Rating
Rating Version: 2.1
2/1/20212019 92.38
11/1/20192018 94.47
3/1/20192017 97.17
12/1/20182016 92.92
6/1/20172015 92.92
12/1/20162015 91.36

This organization received multiple star ratings within this fiscal year, due to an update to it's Accountability and Transparency data and/or the receipt of an amended Form 990.

6/1/20162014 92.92
Rating Version: 2.0
12/23/20152014 91.59
12/22/20142013 89.24
11/1/20132012 81.41
12/1/20122011 88.40
11/1/20112010 73.37
9/20/20112009 76.75
Rating Version: 1.0
11/24/20102009 73.90
7/1/20092007 85.25
4/1/20082006 93.55
2/1/20082005 88.89
8/1/20052004 88.08
8/1/20042003 77.55
8/1/20032002 94.41
4/15/20032001 94.69

...   Impact & Results


This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.


Impact & Results Score

Not Currently Scored

FRAXA Research Foundation cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.

Learn more about Impact & Results.

Do you work at FRAXA Research Foundation? Join the waitlist for an updated Impact & Results score.


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Additional Information

Unscored

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Largest Programs

Largest Programs



FRAXA Research Foundation reported its two largest programs on its FY 2019 Form 990 as:


$991,806

Spent in most recent FY

90%

Percent of program expenses


To raise funds for the direct funding of grant research for the purpose of finding treatment and cure for Fragile X.


$109,322

Spent in most recent FY

9%

Percent of program expenses


To fund programs for the purpose of educating the general public about Fragile X.


...   Leadership & Adaptability


This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.


Leadership & Adaptability Score

100

out of 100

The score earned by FRAXA Research Foundation is a passing score.

Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.


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Leadership & Adaptability Report

100

of 100 points

Mission

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s mission


FRAXA Research Foundation was founded in 1994 by three parents of children with Fragile X syndrome to support scientific research aimed at finding a treatment and a cure for Fragile X syndrome. Fragile X research is drastically underfunded, considering its high prevalence, prospects for a cure, and the promise that this research holds for advancing understanding of other disorders like autism, Alzheimer's disease, and X-linked mental retardation. FRAXA funds grants and fellowships at universities all over the world. We have funded more than $30 million dollars in top-notch science. Fragile X is the most common inherited cause of intellectual impairment and the most common known genetic cause of autism.


Source: Nonprofit submitted responses

Vision

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.


FRAXA envisions a world where those living with and affected by Fragile X can fulfill their potential and ultimately live free of Fragile X.


Source: Nonprofit submitted responses

Strategic Goals

The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.


Goal One: Leverage existing relationships to create stronger partnerships within the Fragile X community.

Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.


Goal Two: Increase funding for targeted translation research.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Three: Refine testing strategies to make research studies more efficient.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Source: Nonprofit submitted responses

Leadership Development

The nonprofit provides evidence of investment in leadership development


Describe an investment in leadership

FRAXA has nominated individuals to federal grant review programs for the purpose of building their evaluation skills, increasing their personal networks and understanding the latest research within the Fragile X field. Additionally we fund the participation in professional conferences that will assist staff in developing tactical skills necessary to excel in their work.

Source: Nonprofit submitted responses

Mobilizing for Mission

The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.


This organization mobilizes for mission in the following ways:
  • Strategic Partnerships

  • Networks of Collective Impact Efforts

  • Thought Leadership

  • Raising Awareness

  • Community Building

  • Policy Advocacy

What are this organization’s external mobilizaton efforts?

FRAXA leads the way in creating global initiatives that create connections within the Fragile X community and generates awareness of the syndrome and its challenges. Our scientific advisors present at international conferences to help others understand our work and the importance of studying neurodevelopment. We leverage our partnerships to advocate for policy changes that will benefit those living with Fragile X. For example, we are currently collaborating with the leading developmental treatment organization to help provide guidance and training to airlines who may serve those living with invisible disabilities.

Source: Nonprofit submitted responses

Story of Adaptability

The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.


The challenges of 2020 threatened to halt all of FRAXA’s work, as our main purpose is to fund research studies across the world. Our main fundraising efforts centered around in-person activities as well. Despite work pausing, FRAXA stayed on pace with our development goals and moved research forward. As the pandemic took hold, FRAXA focused on increasing communication with our constituents. We listened to the challenges they faced with universities closing, labs shutting down and staff taking leave. We immediately extended any grants expected to be completed within 2020 so as to alleviate the stress our recipients were feeling and to retain their interest in Fragile X research. Like much of the world, we adapted to video communication as well. By pivoting in this manner, we actually created more collaboration across the globe. Researchers who had not previously connected were able to do so, and because their current studies were on hold, they had time to spend brainstorming and thinking of new possibilities. As the common thread between these entities, FRAXA helped our constituents move research forward despite studies not taking place. As FRAXA observed the research community connecting more virtually, we also learned our staff could function well doing the same. A once in-person only business is now a virtual shop. The lessons learned through the pandemic allowed us to hire top talent and individuals who already have strong connections within the Fragile X community.

Source: Nonprofit submitted responses

...   Culture & Community


This score provides an assessment of the organization's engagement with the constituents it serves, a practice we term Constituent Feedback. When organizations listen to constituents, they are able to better deliver on programs and meet the needs of stakeholders. A future version of this Beacon will also assess an organization's people operations and its Diversity, Equity and Inclusion (DEI) metrics.


Culture & Community Score

100

out of 100

The score earned by FRAXA Research Foundation is a passing score.

Encompass Rating V4 provides an evaluation of an organization's Culture and Community by measuring its Constituent Feedback practices (see report below). Constituent Feedback data provides 100% of the basis for the initial evaluation of the Culture & Community Beacon.


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Culture & Community Report

100

of 100 points

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Constituent Feedback

Constituent Feedback

Full Credit


This organization reported that it is collecting feedback.


Here's how this organization is listening and learning from the people they serve:


How is your organization collecting feedback from the people you serve?

Note: The organization did not respond to this question.


How is your organization using feedback from the people you serve?

Note: The organization did not respond to this question.


With whom does your organization share the feedback you got from the people you serve?

Note: The organization did not respond to this question.


What challenges does your organization face in collecting feedback from the people you serve?

Note: The organization did not respond to this question.


Briefly describe a recent change that your organization made in response to feedback from the people you serve.

We changed how we were communicating with supporters by adding a video meeting option. This allowed our supporters to connect with not only staff and board members virtually, but also with one another across the country.



Methodology


Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective. We've partnered with GuideStar by Candid to survey organizations about their feedback practices. Nonprofit organizations can fill out the How We Listen section of their Candid profile to receive a rating.


Charity Navigator awards full credit for this Beacon to every nonprofit that is eligible for an Encompass Rating that completes the survey, in recognition of their willingness to publicly share this information with the nonprofit and philanthropic communities. This data is not evaluated for quality at this time. Validation will be added in future iterations of this Beacon.

Analysis and Research


Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Our partnership with Feedback Labs and Guidestar by Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.


Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.

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