FSHD Society

100%

Impact & Measurement

Accountability & Finance

Culture & Community

Leadership & Adaptability

FSHD Society

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501(c)(3) organization

Donations are tax-deductible

http://www.fshdsociety.org

75 North Main Street

Suite 1073Randolph MA 02368

781-301-6060

Randolph MA | IRS ruling year: 1992 | EIN: 52-1762747

An EIN is a unique nine-digit number that identifies a business for tax purposes.

Organization Mission

The FSHD Society is the world's largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and researc ... (More)

Rating Information

Great

This charity's score is 100%, earning it a Four-Star rating. If this organization aligns with your passions and values, you can give with confidence.

This overall score is calculated from multiple beacon scores, weighted as follows: 83% Accountability & Finance, 10% Leadership & Adaptability, 7% Culture & Community. Learn more about our criteria and methodology.

Historical Ratings

Charity Navigator's ratings previously did not consider Leadership & Adaptability, Culture & Community, or Impact & Measurement. The historic rating mainly reflects a version of today’s Accountability and Finance score. More information on our previous rating methodologies can be found on our rating methodology page.

Date Published	Overall Rating
12/1/2021
11/1/2020
9/3/2019
9/1/2018
12/1/2017
12/1/2016
6/1/2016
12/1/2015
This organization received multiple star ratings within this fiscal year, due to an update to its Accountability and Transparency data and/or the receipt of an amended Form 990.
7/1/2015
6/1/2015
4/1/2014
4/1/2013
3/1/2012
9/20/2011
5/1/2011
7/1/2010
5/1/2009
5/1/2008
10/1/2006
11/1/2005

Accountability & Finance

Score

100

Most Recent Fiscal Year:
FY 2023

This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.

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Key Accountability Metrics

Full Credit

Partial Credit

No Credit

Majority Independent Board Members - 100% independent members

10 out of 10 points

Source: IRS Form 990

Independent Board Size - 16 independent members

10 out of 10 points

Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. For most organizations, we check to see if the organization has at least three independent board members. For large, donor-funded organizations, we check to see if the organization has at least five independent board members

Source: IRS Form 990

Financial Statements - Audit and Oversight Committee

20 out of 20 points

An Audit, Review, or Compilation provides important information about financial accountability and accuracy. Organizations are scored based on their Total Revenue Amount:

Total Revenue Amount	Expectation to Receive Credit
$2 million or higher and 40% or higher donor support	Expected to complete an audit and have an audit oversight committee
$1 million or higher	Expected to complete an audit
$500,000 - $1 million	Expected to complete an audit, review, or compilation
Less than $500,000	No expectation (removed from scoring methodology)

Source: IRS Form 990

Material Diversion of Assets - None

20 out of 20 points

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 — also can seriously call into question a charity's financial integrity. We review the charity's most recent IRS Form 990 to see if the charity has reported any diversion of assets.

Source: IRS Form 990

Tax Form Disclosures and Policies

Full Credit

Partial Credit

No Credit

Website Listed on Tax Form - Listed

5 out of 5 points

Charity Navigator looks for a website on the IRS Form 990 as an accountability and transparency metric.

Nonprofits act in the public trust and reporting publicly on activities is an important component.

Source: IRS Form 990

Conflict of Interest Policy - Listed

5 out of 5 points

Charity Navigator looks for the existence of a conflict of interest policy on the IRS Form 990 as an accountability and transparency measure.

This policy protects the organization and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer, director and/or key employee of the organization.

Source: IRS Form 990

Whistleblower Policy - Listed

5 out of 5 points

Charity Navigator looks for the existence of a whistleblower policy per the IRS Form 990 as an accountability and transparency measure.

This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report financial or other types of mismanagement.

Source: IRS Form 990

Document Retention and Destruction - Listed

5 out of 5 points

Charity Navigator looks for the existence of a document retention and destruction policy per the IRS Form 990 as an accountability and transparency measure.

This policy establishes guidelines for the handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promote data integrity.

Source: IRS Form 990

Documents Board Meeting Minutes - Yes

5 out of 5 points

Charity Navigator looks to confirm on the IRS Form 990 that the organization has this process in place as an accountability and transparency measure.

An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference.

Source: IRS Form 990

Tax Form Distributed to Board Before Filing - Listed

5 out of 5 points

Providing copies of the IRS Form 990 to the governing body prior to filing is considered a best practice, as it allows for thorough review by the individuals charged with overseeing the organization. The Form 990 asks the charity to disclose whether or not it has followed this best practice.

Loans to/from Officers - None

5 out of 5 points

Making loans to related parties, such as key officers, staff, or Board members, is not standard practice in the sector as it diverts the charity's funds away from its charitable mission and can lead to real and perceived conflict-of-interest problems.

The IRS requires charities to disclose on their Form 990 any loans to or from current and former officers, directors, trustees, key employees, and other "disqualified persons." Some state laws go so far as to prohibit loans to board members and officers.

Although employees and trustees are permitted to make loans to charities, this practice can also result in real and/or perceived conflict of interest problems for the charity. Furthermore, it is problematic because it indicates that the organization is not financially secure. Our analysts check to see if any loans have been made.

Website Disclosures

Full Credit

Partial Credit

No Credit

Tax Form Posted on Nonprofit's Website as stated on Form 990 - Listed

5 out of 5 points

For almost all charities, we check the charity's IRS Form 990 to see if it discloses that the Form 990 is available on the charity's website. As with the audited financial statement, donors need easy access to this financial report to help determine if the organization is managing its financial resources well.

Source: IRS Form 990

Financial Metrics

Full Credit

Partial Credit

No Credit

Liabilities to Assets: Ratio - 21.90%

25 out of 25 points

The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent IRS Form 990). This ratio is an indicator of an organization's solvency and/or long-term sustainability.

Source: IRS Form 990

Program Expense: Ratio - 81.59%

25 out of 25 points

The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three IRS Forms 990). This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver.

Source: IRS Form 990

Fundraising Efficiency: Ratio - $0.12

25 out of 25 points

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 - 1.10 years

25 out of 25 points

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 IRS Form 990. 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

Additional Information

Total Revenue and Expenses - Data Available

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

Click or hover over the bar to see exact $ amount

Salary of Key Persons - Data Available

This section offers insight into the charity’s compensation structure by listing the salaries of its five highest-paid employees.

Jamshid Arjomand, Chief Science Officer

$263,780

Mark Stone, Ceo & President

$170,858

Kenneth Alexander Kahtava, Chief Business Officer

$144,706

Beth Johnston, Chief Community Engagement

$134,896

Lisa Schimmel, Cfo

$126,407

Source: IRS Form 990 (page 7), filing year 2023

IRS Published Data (Business Master File) - Data Available

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

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) - Data Available

The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage accountability and finance data from it to form Encompass ratings. Click here to search for this organization's Forms 990 on the IRS website (if any are available). Simply enter the organization's name (FSHD Society) or EIN (521762747) in the 'Search Term' field.

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