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

Sources Include: IRS Form 990

Independent Voting Board Members  ... (More) The presence of an independent governing body is strongly recommended by many industry professionals to allow for full deliberation and diversity of thinking on governance and other organizational matters. Our analysts check the Form 990 to determine if the independent Board members are a voting majority and also at least five in number. (Less)
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) Making loans to related parties such as key officers, staff, or Board members, is not standard practice in the sector as it may divert the charity's funds away from its charitable mission and can lead to real and perceived conflict-of-interest problems. This practice is discouraged by sector trade groups which point to the Sarbanes-Oxley Act when they call for charities to refrain from making loans to directors and executives. And the IRS is concerned enough with the practice that it 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." Furthermore, some state laws go so far as to prohibit loans to board members and officers. And 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 is an indicator that the organization is not financially secure.  (Less)
Documents Board Meeting Minutes ... (More) An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference. Charities are not required to make their Board meeting minutes available to the public. As such, we are not able to review and critique their minutes. For this performance metric, we are checking to see if the charity reports on its Form 990 that it does keep those minutes. In the future, we will also track and rate whether or not a charity keeps minutes for its committee meetings.  (Less)
Distributes 990 to Board Before Filing ... (More) Providing copies of the Form to the governing body in advance of 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. If the charity has not distributed its Form 990 to the board before filing, then we deduct 4 points from its Accountability and Transparency score.  (Less)
Does not Compensate Board Members ... (More) The IRS requires that any compensation paid to members of the charity's governing body be listed on the Form 990. Furthermore, all members of the governing body need to be listed whether or not they are compensated. It is not unusual for some members of the board to have compensation listed. The executive director of the organization frequently has a seat on the board, for instance, and is compensated for being a full time staff member. However, it is rare for a charity to compensate individuals only for serving on its Board of Directors. Although this sort of board compensation is not illegal, it is not considered a best practice.  (Less)

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

Conflict of Interest  ... (More) Such a 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 or director of the organization. Charities are not required to share their conflict of interest policies with the public. Although we can not evaluate the substance of its policy, we can tell you if the charity has one in place based on the information it reports on its Form 990. If the charity does not have a Conflict of Interest policy, then we deduct 4 points from its Accountability and Transparency score. (Less)
Whistleblower ... (More) This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report any financial mismanagement. Here we are reporting on the existence of a policy as reported by the charity on its Form 990. (Less)
Records Retention and Destruction ... (More) Such a policy establishes guidelines for handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promotes data integrity. Here we are reporting on the existence of a policy as reported by the charity on its Form 990. If the charity does not have a Records Retention and Destruction Policy, then we deduct 4 points from its Accountability and Transparency score. (Less)
CEO Compensation Process ... (More) This process indicates that the organization has a documented policy that it follows year after year. The policy should indicate that an objective and independent review process of the CEO's compensation has been conducted which includes benchmarking against comparable organizations. We check to be sure that the charity has reported on its Form 990 its process for determining its CEO pay. (Less)
Donor Privacy ... (More) Donors can be reluctant to contribute to a charity when their name, address, or other basic information may become part of donor lists that are exchanged or sold, resulting in an influx of charitable solicitations from other organizations. Our analysts check the charity's website to see if the organization has a donor privacy policy in place and what it does and does not cover. 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)

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

CEO Salary Listed on 990 ... (More) Charities are required to list their CEO's name and compensation on the Form 990. Our analysts check to be sure that the charities complied with the Form 990 instructions and included this information in their filing. (Less)
Board of Directors Listed on Website ... (More) Our analysts check to see if the charity lists Board members on its website. Publishing this information enables donors and other stakeholders to ascertain the make up of the charity's governing body. This enables stakeholders to report concerns to the Board. Charity Navigator does not cross-check the Board members listed on the website with that reported on the Form 990, because the latter often isn't available until more than a year after the charity's fiscal year ends. In that time, the charity's Board members may have changed, and the charity typically reflects those more recent changes on the website. (Less)
Key Staff Listed on Website ... (More) It is important for donors and other stakeholders to know who runs the organization day-to-day. Charity Navigator does not cross-check the leadership listed on the website with that reported on the Form 990 because the latter often isn't available until more than a year after the charity's fiscal year ends. In that time, the charity's leadership may have changed and the charity typically reflects those more recent changes on the website. In other words, since the Form 990 isn't especially timely, it can not be used to verify the leadership information published on the charity's site. (Less)
Audited Financial Statements Listed on Website ... (More) We check the charity's website to see if it has published its audited financial statements for the fiscal year represented by the most recently filed IRS Form 990. It is important for donors to have easy access to this financial report to help determine if the organization is managing its financial resources well. We currently rate charities on whether or not they publish their audit on their website.  (Less)
Form 990 Available on Website ... (More) We check the charity's website to see if it has published its most recently filed IRS Form 990 (a direct link to the charity's 990 on an external site is sufficient). It is important for donors to have easy access to this financial report to help determine if the organization is managing its financial resources well. (Less)

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

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

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

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

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

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

Organizations that demonstrate consistent annual growth in program expenses are able to outpace inflation and thus sustain their programs year to year. These organizations also supply givers with greater confidence by maintaining broad public support for their programs. We compute the average annual growth of program expenses using the following formula: [(Y_n/Y₀)^(1/n)]-1, where Y₀ is a charity's program expenses in the first year of the interval analyzed, Y_n is the charity's program expenses in the most recent year, and n is the interval of years passed between Y₀ and Y_n.

Source: IRS Form 990

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

Presented here are this organizations key compensated staff members as identified by our analysts. This compensation data includes salary, cash bonuses and expense accounts and is displayed exactly how it is reported to the IRS. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting

Current CEO and Board Chair can be found in the Leadership & Adaptability report below.

Source: IRS Form 990 (page 7), filing year 2020

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

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 search for this organization's Forms 990 on the IRS website (if any are available). Simply enter the organization's name (Huntington's Disease Society of America) or EIN (133349872) in the 'Search Term' field.

This organization was impacted by COVID-19 in a way that effected their financial health in 2020. This normally would have reduced their star rating. 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, and doing this pauses our revision of their rating. Charities may submit their own pandemic responses through their nonprofit portal.